#HCLDR Transcript
Healthcare social media transcript of the #HCLDR hashtag.
– ().
See #HCLDR Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | HCLDR Moderator @hcldr Hello Everyone! Welcome to the weekly Health Care Leadership Tweet Chat #hcldr |
| HCLDR Moderator @hcldr Tonight on #hcldr we’re talking about Selling Healthcare Data. Our blog has more info - https://t.co/TT8fovJT8x https://t.co/A38OHTgR60 |
 | Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 Good evening fellow #hcldr folks - The Whisky Librarian checking in with glass in hand: The Amarut Fusion Single Malt Dark and inviting fruit & cinnamon/ rich zesty 🍊 pepper, oak and sherry Finish: a warm Indian 🇮🇳 evening watching sun going down #tonightstipple #whisky #india https://t.co/zOZuxmzyrM |
 | Enlightening Results 💡 @GraceCordovano @bonniesheeren We'll miss you bonnie! have a wonderful time #hcldr |
 | Mariah Obiedzinski @MariahWrites RT @hcldr: Tonight on #hcldr we’re talking about Selling Healthcare Data. Our blog has more info - https://t.co/TT8fovJT8x https://t.co/A38OHTgR60 |
 | John Cloonan | Audacity Marketing | FIWOP Racing @johncloonan Hey @GraceCordovano! Good to see you here tonight! #hcldr |
| HCLDR Moderator @hcldr Helping to keep the chat flowing is wingman extraordinaire Joe @JoeBabaian #hcldr |
| HCLDR Moderator @hcldr Behind this blue circle is @Colin_Hung blogger, community builder, marketer, #healthIT true believer from Toronto, Canada #hcldr |
| Enlightening Results 💡 @GraceCordovano Hi @Colin_Hung and all my #hcldr friends! Been counting the minutes to this one. https://t.co/4DuspHHqV8 |
 | JETS! ✈️ A Miniature Schnauzer in ABQ, New Mexico! @JetsSchnauzer Chuck! & JETS! The @HealthITdog! Here for #hcldr! https://t.co/nnwGMyObXT |
 | Patient Critical Co-op @PatientCritical Finally back at #hcldr! Happy summer from Canada & @PatientCritical everyone! |
 | Larry Gioia 🔠 @LGin412 @jandis_price @PNCBank @PNCNews @rksilva Thanks for the note Jandis. I appreciate you. While I only 'know' you from our interactions through #hcldr and the #pinksocks tribe, I really appreciate you. Thanks for always engaging and connecting authentically. I look forward to meeting you in IRL some day. #ABCD #GSD |
 | ElizabethKelly, Ph.D @Elizabe85727641 Good evening, Liz Kelly, an important topic all health consumers need to know more about. #hcldr |
 | Heather McCullen @H_SalemOaks Hi #hcldr, Heather joining from Ann Arbor representing @SalemOaks |
 | Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @drnic1 I didn't know we were having that type of party, lol #hcldr https://t.co/CCb1l9KJjP |
 | Bingle @TheBingle @drnic1 And you left one thing out.... It's Healthy! #hcldr |
 | Sally James @jamesian Apologies to my tweeps who don't like talking about $ and #health tonight. I'll be chatting with #hcldr Sally from Seattle. |
| HCLDR Moderator @hcldr Let’s start off with introductions! Tell us your name, what you do and where you are based #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Hello all. I'm Shereese, the happiest, most dedicated healthcare strategist on the East Coast. How is everyone tonight? #hcldr https://t.co/HGq7Izd7Vs |
 | Kez! @denniskenez @hcldr @Colin_Hung aka the new IT guy! #hcldr |
 | burtrosen 🟦 @burtrosen best thing about traveling and being in your hotel room in Dallas on a tuesday night? You get to login to #hcldr #NationalAvocadoDay |
 | Colin Hung @Colin_Hung Hello #hcldr this is where I'm tweeting from tonight. Outdoors on a patio in Toronto. Just had dinner with @kymlmartin @RossMartin !!! https://t.co/UoHJTGR4cg |
 | Carol Bush @TheSocialNurse RT @hcldr: Behind this blue circle is @Colin_Hung blogger, community builder, marketer, #healthIT true believer from Toronto, Canada #hcldr |
 | Cred Collab Group @credcollab Hi Everyone! New to the #hcldr chat! I hope you don't mind I join in! |
 | Josephine Borrillo @70mq Hello #hcldr community! It has been awhile. What a great topic tonight! |
| John Cloonan | Audacity Marketing | FIWOP Racing @johncloonan John, Marketing Dir @kinetixtalent, tweeting from Marietta, GA. Definitely pumped for this topic. #hcldr |
| HCLDR Moderator @hcldr For those new to #hcldr every week we gather at 8:30pm ET to discuss interesting & timely healthcare topics |
| HCLDR Moderator @hcldr Our #hcldr chat lasts 1hr. It's designed to educate & promote professional development, critical thinking & spur action |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @70mq Hey Josephine. How's your summer? #hcldr |
| burtrosen 🟦 @burtrosen @dsgold Virtual awkward hug! #hcldr |
| Enlightening Results 💡 @GraceCordovano @drnic1 Simply fabulous. Great choice in white subway tile backsplash with what looks like gray grout. Looks familiar #hcldr https://t.co/G69fjbvccX |
 | Erin Moriarty Wade @EMoriartyWade @drnic1 Where are you in India? I lived there for 6 months and loved it :) #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @ShereesePubHlth It’s always that kind of a party 🎊 #whisky Uisce beatha #hcldr |
| Colin Hung @Colin_Hung @ColtonOrtolf @KelloggSchool Hello Colton. Great to see you #hcldr |
| Erin Moriarty Wade @EMoriartyWade Hi #hcldr friends! I’m a healthcare writer based in South Florida but I’m on vacation in California this week:) |
| HCLDR Moderator @hcldr You can read more about each week’s topic on the #hcldr blog https://t.co/ZeXP9qYIgJ |
| HCLDR Moderator @hcldr While intros continue, let’s go over some #hcldr tweetchat guidelines. |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @credcollabgroup Come on in! This is the friendliest community ever. #hcldr https://t.co/ECUKhTlmhQ |
| Enlightening Results 💡 @GraceCordovano @johncloonan @kinetixtalent You and me both John! Though I've been fired up for days. #hcldr |
 | Rasu Shrestha MD MBA @RasuShrestha @Colin_Hung @kymlmartin @RossMartin @LGin412 @nickisnpdx @JoeBabaian @ShereesePubHlth Food for thought....and thought for food. Yummy. Happy to join #hcldr tonight. |
| Larry Gioia 🔠 @LGin412 Hi HCLDR tweeps! A quick 'hello' and back to getting #LG2 down. 🙋♂️ I will be sitting this one out tonight - flying solo w/ my mini me! Looking fwd to reading the transcript! Have an awesome tweetchat tonight all - sending #heartspeak from #PGH. #hcldr #pinksocks #ABCD |
| Josephine Borrillo @70mq @ShereesePubHlth great! traveled to Europe in June/July but back in #Buffalo ! How about yourself? #hcldr |
 | Barby Ingle Official @BarbyIngle I am @BarbyIngle, Pres of International Pain Foundation @powerofpain and chronic pain patient. I am based in AZ (most of the time). #hcldr |
| Enlightening Results 💡 @GraceCordovano @Colin_Hung @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth Great to see you Colin! Nailed it with tonight's topic #hcldr |
| Colin Hung @Colin_Hung @johncloonan @kinetixtalent Hello John. Thanks for being here my friend #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @burtrosen @drnic1 Do you miss us yet, this crazy healthcare community? #hcldr |
| Bingle @TheBingle Good evening to all! Bingle joining in from New Jersey w/ PtExp #hcldr |
 | Alzheimer's Los Angeles @AlzheimersLA Greetings from super-warm Los Angeles! We help families and caregivers of people living with dementia with resources, support groups, training, and education. Hi #hcldr! |
| Cred Collab Group @credcollab Hi everyone! I am Shannon from the @credcollabgroup joining from sunny Florida. I am the owner of the group where we discuss all things Credentialing. I also help with social media presence as well. #hcldr |
| Sally James @jamesian @credcollabgroup Welcome. Ask questions if something is confusing. It moves fast. #hcldr |
| Colin Hung @Colin_Hung @70mq Hello Josephine! Thanks for joining the conversation #hcldr |
| HCLDR Moderator @hcldr Watch this blue #hcldr avatar for the 4 questions we’ll be discussing. They are labeled T1, T2, T3 and T4. |
| HCLDR Moderator @hcldr We assume all tweets during #hcldr express your own personal opinions & not those of your employer (unless specified) |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @EMoriartyWade Not in India 🇮🇳 although this bottle came back with me from our visit in January #hcldr |
| burtrosen 🟦 @burtrosen burt here from my new gig @ansira but representing my desire to still fix health care! #hcldr |
| John Cloonan | Audacity Marketing | FIWOP Racing @johncloonan @Colin_Hung Hey Colin! Glad to be here again! #hcldr |
| Colin Hung @Colin_Hung @credcollabgroup Welcome to #hcldr Glad you are here. It's going to be a fast paced chat tonight. Love that you are here |
 | Inspire @InspireIsHealth Hello #hcldr, John Novack from Inspire checking in. |
| Colin Hung @Colin_Hung @ShereesePubHlth Hello Shereese! #Hcldr |
 | Sarah Greene @researchmatters #hcldr friends it's great to be back with you! Sarah from Seattle, health services researcher by day, which gives me air cover to do a lot of fun stuff with data, patient engagement, all things health improvement. (yogi & vball player by night) |
| Mariah Obiedzinski @MariahWrites Mariah from #Iowa here! Another hot training run in the books - ready to learn from my favorite tweeps!#hcldr |
| Colin Hung @Colin_Hung @H_SalemOaks @SalemOaks Hello Heather! #hcldr |
| Enlightening Results 💡 @GraceCordovano @burtrosen Great to see you Burt! Hope you found guac and a margarita #NationalAvocadoDay #hcldr https://t.co/08mhxqCg97 |
 | Laura Appel @lauradianeappel Laura, Hospital trade association person. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @70mq Europe? Wow. I'm having a pleasant Summer. Thanks. #hcldr |
| HCLDR Moderator @hcldr Please mark your answers with the appropriate T1, T2, T3, T4 or CT label. This will make our transcript easier to read #hcldr |
| burtrosen 🟦 @burtrosen @ShereesePubHlth @drnic1 i haven't gone anywhere, just a little quieter! #hcldr |
| Enlightening Results 💡 @GraceCordovano @dsgold Hi David! Glad you could join. This one's gonna be good #hcldr |
 | Michael Joseph, PMP @HealthData4All RT @Colin_Hung: Hello #hcldr this is where I'm tweeting from tonight. Outdoors on a patio in Toronto. Just had dinner with @kymlmartin @RossMartin !!! https://t.co/UoHJTGR4cg |
 | Sunnie Southern @SunnieSouthern Hello, @hcldr community. Sunnie here from Cleveland! #hcldr |
| Colin Hung @Colin_Hung @GraceCordovano @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth Thanks Grace! Your blog on the topic was fantastic. Multiple perspectives allows us to fully explore the issue #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA @dsgold @credcollabgroup Co-signed! So many good people and so much good info. #hcldr |
| Mariah Obiedzinski @MariahWrites @johncloonan @Colin_Hung Hi John 😁 #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @RasuShrestha: @Colin_Hung @kymlmartin @RossMartin @LGin412 @nickisnpdx @JoeBabaian @ShereesePubHlth Food for thought....and thought for food. Yummy. Happy to join #hcldr tonight. |
| Colin Hung @Colin_Hung @burtrosen @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth Absolutely! #hcldr |
| burtrosen 🟦 @burtrosen @teaminspire hi john! #hcldr |
 | Kate Warnock @mkatewarnock Hello #hcldr! Tweeting from my home base in FL but just a week ago, yes - I was with AMAZING company :) https://t.co/mIaDeZ5se0 |
| John Cloonan | Audacity Marketing | FIWOP Racing @johncloonan @MariahWrites Hey Mariah! Great to see you! #hcldr |
| Enlightening Results 💡 @GraceCordovano @ShereesePubHlth Great to see you Shereese! Pumped for tonight's discussion. #hcldr https://t.co/LNZI7fDz8h |
| HCLDR Moderator @hcldr We have a lot of remarkable folks with us tonight & lots of ideas will be shared – please try to stay on topic. #hcldr |
| HCLDR Moderator @hcldr Let’s get ready for T1 in just 1 minute #hcldr |
| Colin Hung @Colin_Hung @SunnieSouthern @hcldr Hello Sunnie! So awesome to see you on #hcldr tonight. Can't wait to hear your thoughts on this subject |
 | Nick Adkins @nickisnpdx @Colin_Hung @kymlmartin @RossMartin @LGin412 @RasuShrestha @JoeBabaian @ShereesePubHlth 🥃 #hcldr |
| Mariah Obiedzinski @MariahWrites @AlzheimersLA Hello there! #hcldr |
| burtrosen 🟦 @burtrosen @GraceCordovano about 5 pounds of it! #hcldr |
 | Maria Antonieta Diaz- Fernandez @MdAntonieta Hello!! From 🇲🇽 #hcldr |
| Michael Joseph, PMP @HealthData4All @Colin_Hung @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth Hello Colin, Kym & Ross! #hcldr |
| Enlightening Results 💡 @GraceCordovano @Elizabe85727641 Nice to see you tonight Liz! #hcldr |
| Kate Warnock @mkatewarnock @burtrosen @teaminspire BURT! you're on too? woohoo! #hcldr |
| Mariah Obiedzinski @MariahWrites @TheBingle Howdy! #hcldr |
| Erin Moriarty Wade @EMoriartyWade @drnic1 Well, enjoy it! #hcldr |
 | Ian Bongaardt @IanBongaardt Hey #hcldr 🌎!! Going to try and hop in a bit while putting the kids to bed and reading a 📚 |
| Josephine Borrillo @70mq @ShereesePubHlth destination wedding in Italy 😊 #hcldr |
| Colin Hung @Colin_Hung @npiercePhDRN Hello Nicole. I'll hopefully be in Chicago in a few weeks for a meetup - would love to see you there! #hcldr |
| burtrosen 🟦 @burtrosen @dsgold im developing a great appreciation for my hotel room! #hcldr |
| Enlightening Results 💡 @GraceCordovano @MariahWrites Nice to see you Mariah #hcldr |
| HCLDR Moderator @hcldr T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcldr https://t.co/SrUkWTh3xX |
| Laura Appel @lauradianeappel @2healthguru Photos and video are frightening. Worried for everyone and everything. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA @MariahWrites Hi Mariah :) #hcldr |
| Colin Hung @Colin_Hung @2healthguru No pic tonight Gregg? I don't feel my night is complete without feeling jealous over your locale #hcldr :) |
| Rasu Shrestha MD MBA @RasuShrestha Should we all be asking: "Hey, is that my data you're selling?" Awesome and very current topic for tonight's #HCLDR chat. Full blog here by @Colin_Hung https://t.co/gwOsOExXfE https://t.co/hNO99XlvtM |
| Enlightening Results 💡 @GraceCordovano @researchmatters Hi Sarah! Love volleyball! Been playing summer softball and loving it #hcldr |
 | Matthew Katz, MD 🟦 @subatomicdoc RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcldr https://t.co/SrUkWTh3xX |
| Barby Ingle Official @BarbyIngle T1: As long as the data is de-identified I am ok w it on a 'better our collective health' level. BUT I am sad that I had 2 pay 4 data myself. I think it would be awesome that if we were shared at least we could get a discount 4 our own data. #hcldr |
| burtrosen 🟦 @burtrosen @mkatewarnock @teaminspire hi Kate!!!! #hcldr |
 | Brent Reed @brentnreed T1 From my reading of the GSK press release, it sounds like 23andMe will only share data from those customers who consent to participate -- not those who opt out (1 of 2). #hcldr |
| Colin Hung @Colin_Hung @2healthguru BTW your name came up over dinner with @kymlmartin & @RossMartin talking about the time you had both on video #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 T1 As I said the same day - No revoking my authorization https://t.co/B48aLYfDif #hcldr https://t.co/e5bbazlx08 |
| Mariah Obiedzinski @MariahWrites RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcldr https://t.co/SrUkWTh3xX |
| Bingle @TheBingle @MariahWrites Hi Mariah! Always good to see some great people in #hcldr |
| Colin Hung @Colin_Hung RT @RasuShrestha: Should we all be asking: Should we all be asking: "Hey, is that my data you're selling?" Awesome and very current topic for tonight's #HCLDR chat. Full blog here by @Colin_Hung https://t.co/gwOsOExXfE https://t.co/hNO99XlvtM |
| Sally James @jamesian T1 - I have a problem with assuming ppl understand that "deindentified" data in genetics is a misnomer. You may be outing your children or grandchildren. #geneticliteracy #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc Good evening, Matt Katz, radiation oncologist in Massachusetts. Hello #hcldr - love the topic tonight, I hope you're all well. |
| Colin Hung @Colin_Hung @dsgold @GraceCordovano @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth Thanks David. Great to see you my friend #hcldr |
 | Duke Center for PHC @DukePHC T1Although I disagree with the selling of genetic information, I believe this information should be shared in order to help with scientific discoveries. However,this can only be done if the information is de-identified more securely so that individuals cannot be pinpointed.#hcldr |
| ElizabethKelly, Ph.D @Elizabe85727641 @GraceCordovano Thanks, looking forward to learning along with others. #hcldr |
 | ChronicallyJess @ChronicallyJess Hi guys! A few minutes late. I’m excited to hear everyone’s thoughts and experience with this topic! #hcldr |
 | Bob @RBlount #hcldr lurking fro@ #SFO https://t.co/fZPFSjvdDE |
| Colin Hung @Colin_Hung RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcldr https://t.co/SrUkWTh3xX |
| Brent Reed @brentnreed T1 The combination of informed consent plus de-identification of data make it sound (at least on the surface) like GSK and 23andMe are providing appropriate protections (2 of 2). #hcldr |
| Mariah Obiedzinski @MariahWrites @npiercePhDRN Cedar Rapids area. Awesome! At the U? #hcldr |
| Josephine Borrillo @70mq no, it feels like another cambridge analytics - facebook case #HCLDR |
| Sunnie Southern @SunnieSouthern @Colin_Hung @hcldr Thanks, Colin! I always look forward to Tuesday w/ you and the #hcldr community. Glad to be back home this week so that I can really engage. |
| Mariah Obiedzinski @MariahWrites @GraceCordovano Likewise! 😁 #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 T1 Ironic that this news broke the same time as the misuse of #genomic data by Canadian Authorities to deport migrants https://t.co/XCyrU0Qw9E #hcldr HT @anima_tk https://t.co/gDczVTFyVO |
| Colin Hung @Colin_Hung @subatomicdoc Hello Matt!!! Thanks for being online with us tonight. Looking forward to your tweets on this important topic #hcldr |
| Nick Adkins @nickisnpdx @IanBongaardt read to the kids. skip #hcldr 💖 |
 | Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcldr https://t.co/SrUkWTh3xX |
| Mariah Obiedzinski @MariahWrites @EMoriartyWade @drnic1 Hello to you both! #hcldr |
 | ann wall @shopshi RT @Colin_Hung: If a company is transparent about what they do with collected health data is that enough? Or should it ask for individual permission? Bring your thoughts to #hcldr weekly chat tonight at 8:30pm ET https://t.co/Jq9J7nmsYr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Hi @RasuShrestha @GraceCordovano @TheBingle How's it going? #hcldr https://t.co/TOoSXvE405 |
| Sally James @jamesian T1 - Great thread here by @antonioregalado https://t.co/jQbo9GqSnX #hcldr Average person does not understand data being shared. |
| burtrosen 🟦 @burtrosen T1: I wish they would give de-identified but aggregate data to everyone. its a shame that is going to one pharma company. there's a greater good play here #hcldr |
 | Anthony Leon @anthonynotleon @hcldr A1 - I'm all for getting more data to do more good. I just don't enjoy paying to have my data sold. For free platforms, I get the trade off, but if I'm paying, does that mean selling my info was factored into the price? Seems like double dipping #hcldr |
| Enlightening Results 💡 @GraceCordovano T1) The privacy policy as written emphasized data use for "research purposes" or "scientific findings", not mass aggregation for a golden ticket to bargain w/pharma to gain an exclusive 4 year contract. #hcldr |
| Colin Hung @Colin_Hung @RBlount Hey Bob. Safe travels! #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @RasuShrestha: Should we all be asking: Should we all be asking: "Hey, is that my data you're selling?" Awesome and very current topic for tonight's #HCLDR chat. Full blog here by @Colin_Hung https://t.co/gwOsOExXfE https://t.co/hNO99XlvtM |
| Mariah Obiedzinski @MariahWrites RT @Colin_Hung: If a company is transparent about what they do with collected health data is that enough? Or should it ask for individual permission? Bring your thoughts to #hcldr weekly chat tonight at 8:30pm ET https://t.co/Jq9J7nmsYr |
| Nick Adkins @nickisnpdx T1 yes. https://t.co/r5naNfd93V “Terms of Service”. i read them, and i accepted them. #hcldr |
| Heather McCullen @H_SalemOaks T1: I'm honestly not sure. On one hand, I'm more comfortable with them selling it to one company than I would be with them making it more openly accessible. But, I'm uncomfortable with them charging individuals for a product and then ALSO selling the users data. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcldr https://t.co/SrUkWTh3xX |
| Mariah Obiedzinski @MariahWrites RT @anthonynotleon: @hcldr A1 - I'm all for getting more data to do more good. I just don't enjoy paying to have my data sold. For free platforms, I get the trade off, but if I'm paying, does that mean selling my info was factored into the price? Seems like double dipping #hcldr |
| Colin Hung @Colin_Hung @ChronicallyJess No worries. We're just getting started. Perfect timing #hcldr |
| Michael Joseph, PMP @HealthData4All Greetings all. Happy to join #hcldr in post-op recovery mode. |
| Rasu Shrestha MD MBA @RasuShrestha @RBlount In the shadows, eh? Awesome photo. PS: Safe travels my friend. #hcldr |
| Mariah Obiedzinski @MariahWrites @anthonynotleon @hcldr Totally agree. #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc @Colin_Hung Hi Colin! Glad to be able to join you, I hope you're well. Thanks for raising the issue. Privacy and datamining health information are important to discuss #hcldr |
| Mariah Obiedzinski @MariahWrites RT @burtrosen: T1: T1: I wish they would give de-identified but aggregate data to everyone. its a shame that is going to one pharma company. there's a greater good play here #hcldr |
| Patient Critical Co-op @PatientCritical A1: Yep, beat me to it, Nick. No matter the government or nation, we need to examine motive and also the shell game of EULA's & rights inheritances being put to cross purposes. #hcldr |
 | Iris Thiele Isip Tan MD, MSc @endocrine_witch RT @GraceCordovano: T1) The privacy policy as written emphasized data use for "research purposes" or "scientific findings", not mass aggregation for a golden ticket to bargain w/pharma to gain an exclusive 4 year contract. #hcldr |
| Josephine Borrillo @70mq @burtrosen exactly! why one #bigpharma company and all of them #HCLDR |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @HealthData4All Good evening. How are things in your neck of the woods? #hcldr https://t.co/B74XmTI3L3 |
| Laura Appel @lauradianeappel T1 Not comfortable. Not confident in the product. Not confident (yet) that “research” won’t be used inappropriately for premium pricing, potential discrimination. #hcldr |
| Colin Hung @Colin_Hung @70mq T1 Does it make a difference that they announced this up front vs Cambridge where it was already something that happened? #hcldr |
| burtrosen 🟦 @burtrosen @drnic1 the #dadjoke of the #hcldr chat |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 T1 The concept of De-identified data is a misnomer in todays age of all the data - as this twitter metadata study shows: “Identify 1 user in a group of 10,000 with ~96.7% accuracy” #Privacy #hcldr https://t.co/xSBkYyLaSJ HT @schneierblog https://t.co/QoSoL71Bdz |
| Bingle @TheBingle @hcldr T1 No. Nothing is "de-identified" IMHO. And it's just a matter of price. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @drnic1: T1 The concept of De-identified data is a misnomer in todays age of all the data - as this twitter metadata study shows: “Identify 1 user in a group of 10,000 with ~96.7% accuracy” #Privacy #hcldr https://t.co/xSBkYyLaSJ HT @schneierblog https://t.co/QoSoL71Bdz |
| Anthony Leon @anthonynotleon @hcldr A1 - The other concerning part is the re-identifying of data that has been shown possible. I'm familiar with too many pharma projects getting involved with patient data and my feelings are it isn't for the greater good. #hcldr https://t.co/GLAeB8od8y |
| burtrosen 🟦 @burtrosen @RBlount hey bob! #hcldr |
| Sarah Greene @researchmatters Burt that was exactly the reaction I had. Why not find the broadest possible public benefit? #hcldr |
 | Michael Chaikof, MD @MichaelChaikof A1 I think it totally depends on what they tell the consumer up front. If they consent to this when they used the service, then it’s okay. If not, then it’s absolutely unacceptable #HCLDR |
| Mariah Obiedzinski @MariahWrites RT @DukePHC: T1Although I disagree with the selling of genetic information, I believe this information should be shared in order to help with scientific discoveries. However,this can only be done if the information is de-identified more securely so that individuals cannot be pinpointed.#hcldr |
| Alzheimer's Los Angeles @AlzheimersLA Most terms of service don't allow people to opt out. Either you accept, or don't use the product. Is that really a choice? Do consumers really have options in that case? #hcldr https://t.co/bVsQCn5jyK |
| Enlightening Results 💡 @GraceCordovano @brentnreed T1) The blanket statement legalese "may" be there but there needed to be more transparency. This was meant to build a bio data bank for sale from the beginning. A clear bait and switch. #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch @hcldr T1 Are there enough safeguards? Sets precedent? #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc RT @drnic1: T1 The concept of De-identified data is a misnomer in todays age of all the data - as this twitter metadata study shows: “Identify 1 user in a group of 10,000 with ~96.7% accuracy” #Privacy #hcldr https://t.co/xSBkYyLaSJ HT @schneierblog https://t.co/QoSoL71Bdz |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans Hey everyone! Angela here lurking about from Atlanta ☺️ #hcldr https://t.co/DDNfK8RbVh |
| Alzheimer's Los Angeles @AlzheimersLA RT @GraceCordovano: T1) The privacy policy as written emphasized data use for "research purposes" or "scientific findings", not mass aggregation for a golden ticket to bargain w/pharma to gain an exclusive 4 year contract. #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc RT @lauradianeappel: T1 Not comfortable. Not confident in the product. Not confident (yet) that “research” won’t be used inappropriately for premium pricing, potential discrimination. #hcldr |
| John Cloonan | Audacity Marketing | FIWOP Racing @johncloonan T1: I don't think individual data should ever be offered, anonymized or not. Aggregate data is important to research. #hcldr |
| HCLDR Moderator @hcldr Repeating T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcldr https://t.co/SIryJU7Zl4 |
| Kate Warnock @mkatewarnock T1 Before @Colin_Hung's @GraceCordovano's excellent articles, I was very much of this mindset. Now, not so sure. Aggregate data necessary for #pophealth to advance, but it has to represent ALL ethnicities, races, genders, etc. #hcldr |
| Colin Hung @Colin_Hung @BrianLRMan T1 That's the crux. On one side, I LOVE that data can enrich research in this new area. On the other is the blanket approach without consulting patients. Does one outweigh the other? Could it have been done differently? #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA RT @burtrosen: T1: T1: I wish they would give de-identified but aggregate data to everyone. its a shame that is going to one pharma company. there's a greater good play here #hcldr |
| ChronicallyJess @ChronicallyJess T1: data mining is here and it’s happening in many different avenues of healthcare. Assuming that data mining will happen regardless, one of my main concerns is anonymity being voided and information used to deny coverage or employment to identified patients. #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @DukePHC The problem with that is there is no de-identification of #genomic data in the age of #bigdata #hcldr |
 | Virginia @PracticalHIT @hcldr #hcldr @PracticalHIT happy summer hello |
| Kez! @denniskenez T1 No. Not even close to their stated mission. They should disclose their data selling intent up front to 'customers' #hcldr |
| Brent Reed @brentnreed @DukePHC T1 So perhaps the data is not shared as an entire individual's genome, but only as areas of interest (i.e., genes related to the specific disorder being studied)? #hcldr |
| Colin Hung @Colin_Hung RT @anthonynotleon: @hcldr A1 - I'm all for getting more data to do more good. I just don't enjoy paying to have my data sold. For free platforms, I get the trade off, but if I'm paying, does that mean selling my info was factored into the price? Seems like double dipping #hcldr |
| Cred Collab Group @credcollab T1: I am comfortable with them using it for data as long as it is truly de-identified. I don't think they should sell it to them because they are making money on the front end from people like me. #hcldr |
| Colin Hung @Colin_Hung RT @burtrosen: T1: T1: I wish they would give de-identified but aggregate data to everyone. its a shame that is going to one pharma company. there's a greater good play here #hcldr |
 | International Pain Foundation® @iPainOfficial RT @BarbyIngle: T1: T1: As long as the data is de-identified I am ok w it on a 'better our collective health' level. BUT I am sad that I had 2 pay 4 data myself. I think it would be awesome that if we were shared at least we could get a discount 4 our own data. #hcldr |
 | iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T1: T1: As long as the data is de-identified I am ok w it on a 'better our collective health' level. BUT I am sad that I had 2 pay 4 data myself. I think it would be awesome that if we were shared at least we could get a discount 4 our own data. #hcldr |
| John Cloonan | Audacity Marketing | FIWOP Racing @johncloonan @AngelaHemans Howdy, neighbor! *waves from Marietta* #hcldr |
 | Kimberly George @kimberlyanngeo RT @mkatewarnock: T1 Before @Colin_Hung's @GraceCordovano's excellent articles, I was very much of this mindset. Now, not so sure. Aggregate data necessary for #pophealth to advance, but it has to represent ALL ethnicities, races, genders, etc. #hcldr |
 | Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: T1: T1: As long as the data is de-identified I am ok w it on a 'better our collective health' level. BUT I am sad that I had 2 pay 4 data myself. I think it would be awesome that if we were shared at least we could get a discount 4 our own data. #hcldr |
 | Kistein Monkhouse, MPA @KisteinM @Colin_Hung @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth Hi Colin! Joining from somewhere over the pacific 🍷 @Delta @TMobile #TMobileWingman #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch RT @Colin_Hung: @BrianLRMan T1 That's the crux. On one side, I LOVE that data can enrich research in this new area. On the other is the blanket approach without consulting patients. Does one outweigh the other? Could it have been done differently? #hcldr |
| Patient Critical Co-op @PatientCritical A1: The devil's in the fine print. As long as EULA's can be changed by the company at any time, #patientdata #digitalrights is a #shellgame #hcldr https://t.co/3I22xMTKow |
| Josephine Borrillo @70mq @Colin_Hung I saw a lot of comments on social media from people asking where they can opt out. So was it really up front? #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @Colin_Hung @70mq Announcing it is the responsible thing to do. That being said, if you're going to hurt me, does it hurt less if you tell me first? I don't think so. "Informed" has become a flexible term, and not in a good way. #hcldr |
| Colin Hung @Colin_Hung @burtrosen T1 That's an interesting idea Burt - sort of open source research vs only giving the data to one company #hcldr |
| Enlightening Results 💡 @GraceCordovano T1) Tired of all the "hush, hush" underground de-identification practices. Come forward & partner directly with #patients. There's the treatment landscape changing power move. #hcldr |
 | Prithviraj Dey @PrithvirajDey7 RT @drnic1: Good evening fellow #hcldr folks - The Whisky Librarian checking in with glass in hand: The Amarut Fusion Single Malt Dark and inviting fruit & cinnamon/ rich zesty 🍊 pepper, oak and sherry Finish: a warm Indian 🇮🇳 evening watching sun going down #tonightstipple #whisky #india https://t.co/zOZuxmzyrM |
| Alzheimer's Los Angeles @AlzheimersLA RT @lauradianeappel: T1 Not comfortable. Not confident in the product. Not confident (yet) that “research” won’t be used inappropriately for premium pricing, potential discrimination. #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc @lauradianeappel T1. I agree; @23andme relaunched but I had multiple concerns when its product was pulled by the FDA https://t.co/jotERhyTiG #hcldr |
| Michael Joseph, PMP @HealthData4All RT @DukePHC: T1Although I disagree with the selling of genetic information, I believe this information should be shared in order to help with scientific discoveries. However,this can only be done if the information is de-identified more securely so that individuals cannot be pinpointed.#hcldr |
| Bingle @TheBingle Yup! #hcldr |
| Nick Adkins @nickisnpdx @AlzheimersLA this is a fun documentary from 2013: https://t.co/UUA1b9clLm #hcldr |
| Cred Collab Group @credcollab @endocrine_witch @hcldr That would be my worry as well. #hcldr |
| Patient Critical Co-op @PatientCritical A1: "simply removing a name, address & SSN from a... record (NO LONGER PROTECTS) anonymity...data-mining tools can (ID) the indiv from,,,private medical records (AS PROVEN WHEN) Mass. governor William Weld (WAS ID'D IN ANONYMIZED) hospital records." https://t.co/Pp3Cji9VMc #hcldr |
| Virginia @PracticalHIT @hcldr #hcldr in general i am not comforyanle with all the data aboit me and others floating around but its like pandoras box is already open |
| Erin Moriarty Wade @EMoriartyWade @hcldr T1. The main reason why I’m not comfortable with the @GSK @23andme deal is that it aims to make money for two companies without any compensation to (or permission from) the patients. #hcldr |
| burtrosen 🟦 @burtrosen @researchmatters they are a business and deserve the $, but ugh #hcldr |
| Colin Hung @Colin_Hung @KisteinM @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth @Delta @TMobile Appreciate the dedication to join us from the air Kistein. Vacation or work? #hcldr |
| Rasu Shrestha MD MBA @RasuShrestha T1: Honestly, I'm personally more concerned about HOW this was done. I'm all for data for research. But I'm not sure that many/most @23andMe customers (including me!) were even aware that this was possible! I'd have ok'd it if I had been asked - but I was not, was I?🤔 #HCLDR |
| Sally James @jamesian @Colin_Hung @BrianLRMan Yes, could have been done differently. See @antonioregalado https://t.co/8Sz1qsg9uK thread #hcldr |
| JETS! ✈️ A Miniature Schnauzer in ABQ, New Mexico! @JetsSchnauzer Well, in my case, it's 39andMe... and I'd be delighted to see more research into the genetics of miniature schnauzers, for example, I'm a blue merle (some of us have blue eyes, tho I don't), caused by a recessive gene, and we have occasional health issues! #hcldr |
| Michael Joseph, PMP @HealthData4All RT @brentnreed: T1 The combination of informed consent plus de-identification of data make it sound (at least on the surface) like GSK and 23andMe are providing appropriate protections (2 of 2). #hcldr |
| ChronicallyJess @ChronicallyJess @MichaelChaikof Even if something like this is in the “fine print” does this go far enough to be considered as notifying the user? I worry that the average user can’t wrap their head around the possible implications of the use of their data in the future. #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch @Colin_Hung @BrianLRMan T1 is this akin to when clinical trial participants consent to have blood extracted for the trial, stored for some future yet unknown tests? #hcldr |
| Kate Warnock @mkatewarnock T1 This! Remember the @NIH Million person megastudy? https://t.co/2YFUkj812U #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @drnic1: T1 The concept of De-identified data is a misnomer in todays age of all the data - as this twitter metadata study shows: “Identify 1 user in a group of 10,000 with ~96.7% accuracy” #Privacy #hcldr https://t.co/xSBkYyLaSJ HT @schneierblog https://t.co/QoSoL71Bdz |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 RT @PatientCritical: A1: A1: The devil's in the fine print. As long as EULA's can be changed by the company at any time, #patientdata #digitalrights is a #shellgame #hcldr https://t.co/3I22xMTKow |
| Sunnie Southern @SunnieSouthern T1: Would like to see a policy of must "opt in" versus have to figure out how to "opt out". Wish companies spent as much on engaging & educating people to get consent as they do to get around it. Let Cos show value in exchange for #healthdata & give us a reason to say yes #hcldr |
| ElizabethKelly, Ph.D @Elizabe85727641 No, data base development & questionnaire all have point of view/cause to measure tangibles. As data shared other variable injected that may not related to original data collection purpose. Data reflects the individual, who are much more than numbers. #hcldr |
| Sally James @jamesian @drnic1 @DukePHC See great thread, agreeing with your point, at @antonioregalado https://t.co/8Sz1qsg9uK #hcldr |
 | Nicole L. Bohr, PhD, RN @nbohrPhDRN RT @GraceCordovano: T1) Tired of all the "hush, hush" underground de-identification practices. Come forward & partner directly with #patients. There's the treatment landscape changing power move. #hcldr |
| Colin Hung @Colin_Hung @mkatewarnock @GraceCordovano T1 That's the danger in having biased datasets and NOT realizing it. 23andMe data is naturally biased to a certain socioeconomic swath of population. I'm all for using the data, but opt-in would have been better & I hope they recognize the limitations in the data #hcldr |
| Michael Joseph, PMP @HealthData4All RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcldr https://t.co/SrUkWTh3xX |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans T1. I don’t care for it. There should be an opt out option for this. I should have the right to not participate in whatever ongoing research is taking place. #hcldr |
| Bingle @TheBingle @RasuShrestha @Colin_Hung You may be possibly amazed at the "price" one obtains for the right information. #hcldr |
| Enlightening Results 💡 @GraceCordovano @DukePHC The information is invaluable & greatly needed. Companies should partner directly with patients for their data. Imagine if that $300M was invested universally in patients from all ethnicities, ages, socioeconomic backgrounds. Powerful #hcldr |
| Colin Hung @Colin_Hung RT @endocrine_witch: @Colin_Hung @BrianLRMan T1 is this akin to when clinical trial participants consent to have blood extracted for the trial, stored for some future yet unknown tests? #hcldr |
| Sunnie Southern @SunnieSouthern RT @drnic1: T1 Ironic that this news broke the same time as the misuse of #genomic data by Canadian Authorities to deport migrants https://t.co/XCyrU0Qw9E #hcldr HT @anima_tk https://t.co/gDczVTFyVO |
| burtrosen 🟦 @burtrosen @Colin_Hung right, i know there are citizen science groups collecting data for broader use, but they are non-profits. i can't fault @23andMe as they are for profit, but still leaves a bad feeling #hcldr |
| Colin Hung @Colin_Hung RT @jamesian: @Colin_Hung @BrianLRMan Yes, could have been done differently. See @antonioregalado https://t.co/8Sz1qsg9uK thread #hcldr |
| Rasu Shrestha MD MBA @RasuShrestha @HealthITdog Wow, thanks for sharing that! I'm all in for more data for more research. #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 RT @PatientCritical: A1: A1: "simply removing a name, address & SSN from a... record (NO LONGER PROTECTS) anonymity...data-mining tools can (ID) the indiv from,,,private medical records (AS PROVEN WHEN) Mass. governor William Weld (WAS ID'D IN ANONYMIZED) hospital records." https://t.co/Pp3Cji9VMc #hcldr |
| Patient Critical Co-op @PatientCritical A1: That's the shell game: as long as there's 'wiggle room' in the legalese, #patientdata rights are...well...easily wiggled out of whenever it suits the other party's motives. #hcldr |
| Kate Warnock @mkatewarnock RT @Colin_Hung: @mkatewarnock @GraceCordovano T1 That's the danger in having biased datasets and NOT realizing it. 23andMe data is naturally biased to a certain socioeconomic swath of population. I'm all for using the data, but opt-in would have been better & I hope they recognize the limitations in the data #hcldr |
| Brent Reed @brentnreed @GraceCordovano That could be true -- and perhaps I am being naively optimistic here -- but it is similar to what a standard IRB would require. #hcldr |
| Enlightening Results 💡 @GraceCordovano @brentnreed @DukePHC I'm waiting for the announcement that the entire 23andMe company has been sold and all that data goes with it. Then what. #hcldr |
| Colin Hung @Colin_Hung @npiercePhDRN No conference. Just a #HITMC #HITsm #hcldr meetup in Chicago. Details soon! Would love to see you. |
| Cred Collab Group @credcollab @EMoriartyWade @hcldr @GSK @23andMe I think the patients should make something at least. #hcldr |
| Sally James @jamesian @ChronicallyJess @MichaelChaikof They can't. Who can wrap their head around revealing things that your children or grandchildren may not want revealed? Future insights of #genomics? #hcldr Great thread here https://t.co/8Sz1qsg9uK |
| Colin Hung @Colin_Hung RT @ShereesePubHlth: @Colin_Hung @70mq Announcing it is the responsible thing to do. That being said, if you're going to hurt me, does it hurt less if you tell me first? I don't think so. "Informed" has become a flexible term, and not in a good way. #hcldr |
 | Janet Kennedy @GetSocialHealth Hey all! Janet Kennedy with the Get Social Health #podcast and @HMNwriters! Great to see you all. #HCLDR |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T1 Essentially I don't think it can be avoided, but that doesn't mean I'm comfortable with any organization selling data, which IMHO, is inalienable from the rightful owner, the individual #hcldr |
| Heather McCullen @H_SalemOaks RT @GraceCordovano: @brentnreed @DukePHC I'm waiting for the announcement that the entire 23andMe company has been sold and all that data goes with it. Then what. #hcldr |
| Sarah Greene @researchmatters Interesting thought experiment to juxtapose the @AllofUsResearch initiative and the @23andMe. On the face of it, each has the same quest. Leverage data to understand the contribution of genes to health and medicine. But the "business models" could not be more divergent. #hcldr |
| Kistein Monkhouse, MPA @KisteinM @RBlount #SFO #hcldr tweeting also 🏥 |
| Colin Hung @Colin_Hung @ShereesePubHlth @70mq T1 Well said Shereese. It doesn't take away the privacy issue but at least they were up front about it #hcldr |
| ChronicallyJess @ChronicallyJess @gmathews71 @hcldr I worry that what your saying is likely true- policy to protect the people is reactive... meaning that some data will get exposed and people will then need to demand protection from the government to keep companies from using the data this way. Maybe I’m too negative... #hcldr |
| Rasu Shrestha MD MBA @RasuShrestha RT @GraceCordovano: T1) Tired of all the "hush, hush" underground de-identification practices. Come forward & partner directly with #patients. There's the treatment landscape changing power move. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @Colin_Hung: @ShereesePubHlth @70mq T1 Well said Shereese. It doesn't take away the privacy issue but at least they were up front about it #hcldr |
| Colin Hung @Colin_Hung RT @jamesian: @ChronicallyJess @MichaelChaikof They can't. Who can wrap their head around revealing things that your children or grandchildren may not want revealed? Future insights of #genomics? #hcldr Great thread here https://t.co/8Sz1qsg9uK |
| Colin Hung @Colin_Hung RT @EMRAnswers: |
 | James A. Gardner @jamesagardner James from Boston here, lurking and learning. Unusually, I’m almost on time tonight! 🏥😊 #HCLDR |
| Anthony Leon @anthonynotleon RT @EMoriartyWade: @hcldr T1. The main reason why I’m not comfortable with the @GSK @23andme deal is that it aims to make money for two companies without any compensation to (or permission from) the patients. #hcldr |
| Sarah Greene @researchmatters @mkatewarnock @NIH Exactly, Kate--see the tweet I posted while this was coming through! #joinallofus #PrecisionMedicine @ericdishman #hcldr |
| Kimberly George @kimberlyanngeo @RasuShrestha @23andMe The main reason I joined @23andMe was to allow my DNA to be part of future research. While I did not expect they would sell my data, I did expect it would be used routinely for genetic studies and pharma R&D to advance personalized medicine. #hcldr |
| Rasu Shrestha MD MBA @RasuShrestha @GraceCordovano YES!!! Partner directly with patients! Be more open, and upfront. Ask! #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @ChronicallyJess @gmathews71 @hcldr Historically it has been reactive. It's seems to be the only way we know how to regulate. #hcldr |
| Bingle @TheBingle Fascinating. #hcldr |
 | David Goldsmith @dsgold @GraceCordovano @DukePHC There’s a movement building to make this happen, but it’s going to take time. In the meantime, there’s a lot of critical education and advocacy to get us there and to recognize that our data should be viewed as a property right vis-a-vis #my31 and similar campaigns. #hcldr |
 | PF Anderson @pfanderson@disabled.social @pfanderson RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcldr https://t.co/SrUkWTh3xX |
| Enlightening Results 💡 @GraceCordovano @burtrosen @Colin_Hung @23andMe They tout all done for the greater good: data pool is skewed to represent only those who could afford the $200 kit; not representative of population. Exclusive deal means data only caters to GSKs pipeline & priorities. Not greater good. Only good for the partners. #hcldr |
| Mariah Obiedzinski @MariahWrites @dsgold @23andMe A lot of consumers just blindly accept #HealthTech legalese anyway. It's too complex for most of us patients. #guilty #hcldr |
| Colin Hung @Colin_Hung RT @RasuShrestha: @GraceCordovano YES!!! Partner directly with patients! Be more open, and upfront. Ask! #hcldr |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans @johncloonan Hello John👋🏾! Did you get some of that down pour?? #HCLDR https://t.co/T5J3sYzD5b |
 | Gregg Masters MPH @2healthguru RT @SunnieSouthern: T1: T1: Would like to see a policy of must "opt in" versus have to figure out how to "opt out". Wish companies spent as much on engaging & educating people to get consent as they do to get around it. Let Cos show value in exchange for #healthdata & give us a reason to say yes #hcldr |
| Kistein Monkhouse, MPA @KisteinM @Colin_Hung @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth @Delta @TMobile Of course, happy to be here! Work trip..getting the word out on #sdoh #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @AngelaHemans Agreed and the default should be out with a requirement to opt in for offering access But you still have to trust #hcldr |
| Sarah Greene @researchmatters @jhoronjeff are you with us on #hcldr tonight? @savvy_coop |
| JETS! ✈️ A Miniature Schnauzer in ABQ, New Mexico! @JetsSchnauzer Good point. Issue is data bias, not algorithmic bias (yes, algorithms can be biased, but it's typically the data, not the algorithm, that is biased)... but of course I'm just a puppy... #hcldr |
| Sally James @jamesian @ChronicallyJess @MichaelChaikof Truly informed consent would require fictional video showing your grandchild turned away from job, marriage or ??? because of mutation you revealed in 2018. #hcldr |
| Rasu Shrestha MD MBA @RasuShrestha @kimberlyanngeo @23andMe Yes, me too. #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc @ColtonOrtolf @lauradianeappel @23andMe They still don't, and the business model is selling information on slick marketing that doesn't really inform users well. Selling to pharma confirms the business model many suspected. #hcldr |
| David Goldsmith @dsgold RT @MariahWrites: @dsgold @23andMe A lot of consumers just blindly accept #HealthTech legalese anyway. It's too complex for most of us patients. #guilty #hcldr |
| Anthony Leon @anthonynotleon @ShereesePubHlth @Colin_Hung @70mq Didn't they also just announce they are putting in extra guidelines today? I mean, after the deal was closed? That whole self regulation so you can avoid additional regulation? #hcldr |
| ChronicallyJess @ChronicallyJess @EMoriartyWade @hcldr @GSK @23andMe SAY IT AGAIN FOR THE PEOPLE IN THE BACK! Patient compensation for contributions to research is so lacking. #hcldr |
| Michael Joseph, PMP @HealthData4All @hcldr Seems like an appropriate use of clinical data for GSK research. If T's & C's were clear, then consumers were well informed. Would be nice to have mechanism to reward customers for sharing their data, like token value on #blockchain. #hcldr |
 | Sandra Woods, CIPP/C; she/her @SandraWoodsMtl #hcldr T1 To borrow from my clinical research ethics background, to give informed consent to something, you must understand what it is that you're consenting to, and it's potential future impact. How many, even physicians & researchers, understand genetic data use risks? https://t.co/UBwQadBTJG |
| HCLDR Moderator @hcldr An amazing T1 discussion. Let’s get ready for T2 in just 1 minute #hcldr |
| Kate Warnock @mkatewarnock T1 Yep. #hcldr |
| Patient Critical Co-op @PatientCritical @GraceCordovano See my tweet about de-ID'd data in fact being easliy reconstructed in today's world. All data needs a framework that's entrenched, incontrovertible. No EULA comes close to that yet. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA @nickisnpdx I think it was on Netflix recently. Adding to the queue! #hcldr |
| Ken Taylor, RPIC @KenRayTaylor T1 Yes, ONLY if it remains anonymous. I think it can be very helpful to identify and offer great information. #hcldr |
| Cred Collab Group @credcollab @ShereesePubHlth I agree. I really don't think you can avoid it. The worry is, is it really unidentified. #hcldr |
| Colin Hung @Colin_Hung @EMRAnswers @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth Can you believe I forgot to take a selfie with them and @BoyleBJ Clearly I'm off my game :) #hcldr |
 | Jennifer @vitalfrequencis RT @RasuShrestha: Should we all be asking: Should we all be asking: "Hey, is that my data you're selling?" Awesome and very current topic for tonight's #HCLDR chat. Full blog here by @Colin_Hung https://t.co/gwOsOExXfE https://t.co/hNO99XlvtM |
| ChronicallyJess @ChronicallyJess @gmathews71 @hcldr 😂 your gif-use is gold. #hcldr |
| Josephine Borrillo @70mq RT @kimberlyanngeo: @RasuShrestha @23andMe The main reason I joined @23andMe was to allow my DNA to be part of future research. While I did not expect they would sell my data, I did expect it would be used routinely for genetic studies and pharma R&D to advance personalized medicine. #hcldr |
| Heather McCullen @H_SalemOaks @jamesian @ChronicallyJess @MichaelChaikof I'm usually the paranoid one around here.. #hcldr |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T1 Yes, ONLY if it remains anonymous. I think it can be very helpful to identify and offer great information. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson Chiming in late to #hcldr For the record, I *am* a fan of the @23andMe - GSK collaboration. Why? GSK has history of enabling access to their meds for poor & underprivileged; hoping for new solutions |
| Gregg Masters MPH @2healthguru RT @jamesian: @ChronicallyJess @MichaelChaikof They can't. Who can wrap their head around revealing things that your children or grandchildren may not want revealed? Future insights of #genomics? #hcldr Great thread here https://t.co/8Sz1qsg9uK |
| Enlightening Results 💡 @GraceCordovano @gmathews71 @hcldr HIPAA is outdated & harming patients, the healthcare economy. Waiting for headlines that 23andMe is sold and the data goes to the buyer. #hcldr |
| Colin Hung @Colin_Hung RT @pfanderson: Chiming in late to #hcldr For the record, I *am* a fan of the @23andMe - GSK collaboration. Why? GSK has history of enabling access to their meds for poor & underprivileged; hoping for new solutions |
| John Cloonan | Audacity Marketing | FIWOP Racing @johncloonan @AngelaHemans I think we got all of it! I was stuck commuting in it this evening, 'twas tough! #hcldr |
| Nick Adkins @nickisnpdx @2healthguru one of the producers is a friend here in pdx. it is a must watch. we all surrendered long ago to the convenience of the internet. #hcldr |
| Mariah Obiedzinski @MariahWrites @GraceCordovano @burtrosen @Colin_Hung @23andMe And isn't it incomplete and entirely unverified? I'm all for patient-provided data, but a wrongly checked box or contaminated sample can drew data. #hcldr |
| Janet Kennedy @GetSocialHealth Fine print is a b*tch. #HCLDR |
| HCLDR Moderator @hcldr T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor’s EHR) and then having it sold? #hcldr https://t.co/CXjBPAZ8mA |
| Erin Moriarty Wade @EMoriartyWade T1. I was willing to consent to put my daughter’s genetic data in a longterm research study at a university medical center to help docs work toward possibly finding markers (without compensation), but I wouldn’t want to give data for free to a company to help them make $. #hcldr |
| Rasu Shrestha MD MBA @RasuShrestha @ShereesePubHlth @GraceCordovano @TheBingle Glad to be back on #hcldr after a bit of a hiatus. Hi @Colin_Hung and my #hcldr family. https://t.co/Un5ITuJaP6 |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @GraceCordovano @brentnreed @DukePHC Right and whatever agreements were in place are now all void #hcldr |
| Sally James @jamesian @H_SalemOaks @ChronicallyJess @MichaelChaikof Just quoting @antonioregalado https://t.co/8Sz1qsg9uK #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @ChronicallyJess: @EMoriartyWade @hcldr @GSK @23andMe SAY IT AGAIN FOR THE PEOPLE IN THE BACK! Patient compensation for contributions to research is so lacking. #hcldr |
| Kate Warnock @mkatewarnock T1 Wish I had said it this way 😉 #hcldr |
 | Brian Ellerman @BrianLRMan @hcldr I think we need about 30 minutes per topic this evening! 😉 #hcldr |
| Kez! @denniskenez RT @GetSocialHealth: Fine print is a b*tch. #HCLDR |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans RT @drnic1: @AngelaHemans Agreed and the default should be out with a requirement to opt in for offering access But you still have to trust #hcldr |
 | Pam Ressler @pamressler The best medicine is listening to the patient #resilience #medx #hcldr https://t.co/fz2aPtNQsy |
| PF Anderson @pfanderson@disabled.social @pfanderson @DukePHC Agree about the de-identification, but ... what is "more securely"? And what about people who opt-in or CHOOSE to make info available? Esp. as partnership! #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA RT @hcldr: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor’s EHR) and then having it sold? #hcldr https://t.co/CXjBPAZ8mA |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 RT @jamesian: @ChronicallyJess @MichaelChaikof They can't. Who can wrap their head around revealing things that your children or grandchildren may not want revealed? Future insights of #genomics? #hcldr Great thread here https://t.co/8Sz1qsg9uK |
| Patient Critical Co-op @PatientCritical A2: (1/2) Peter Pitts, Center for Medicine in the Public Interest: "people mostly volunteered this data for “higher good” since the company was working with publicly funded or nonprofit institutions (and) not for a partnership with the big Pharma (Glaxo)" @drugwonks #hcldr |
| Carol Bush @TheSocialNurse RT @pamressler: The best medicine is listening to the patient #resilience #medx #hcldr https://t.co/fz2aPtNQsy |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 T2 I think the term “voluntarily” is inconsistent with the user experience - much like the AUP policies insist you “accept” a 40 page document, refusal prevents you from using the software tool service #hcldr Need an #AI tool to help understand consent https://t.co/IBjawyvUdI |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T1 Yes, ONLY if it remains anonymous. I think it can be very helpful to identify and offer great information. #hcldr |
| Heather McCullen @H_SalemOaks T2: Absolutely. I am 100% against sharing someones genetic data (or other medical data for that matter) without consent. #hcldr |
 | 𝓝𝓪𝓽𝓻𝓲𝓬𝓮𝓡 😷🇨🇦❤️ 🥀 @NatriceR RT @pamressler: The best medicine is listening to the patient #resilience #medx #hcldr https://t.co/fz2aPtNQsy |
| Colin Hung @Colin_Hung @pfanderson @23andMe T1 That's what makes this discussion so vital. I agree that we will see benefits as a society from the unlocking of this data. What's concerning is the degree of involvement of the people whose data is being used. I'm a bit torn on this #hcldr |
| Sarah Greene @researchmatters Yes--have been following and seeing how it is all unfurling. This has been tried so many times (#MillionVeteransProject, #NationalChildrensStudy, etc.). Keep on trying til they get it right? Or listen to Einstein's definition of insanity? #hcldr |
| Colin Hung @Colin_Hung RT @drnic1: T2 I think the term “voluntarily” is inconsistent with the user experience - much like the AUP policies insist you “accept” a 40 page document, refusal prevents you from using the software tool service #hcldr Need an #AI tool to help understand consent https://t.co/IBjawyvUdI |
| Mariah Obiedzinski @MariahWrites RT @hcldr: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor’s EHR) and then having it sold? #hcldr https://t.co/CXjBPAZ8mA |
| Colin Hung @Colin_Hung RT @PatientCritical: A2: (1/2) Peter Pitts, Center for Medicine in the Public Interest: A2: (1/2) Peter Pitts, Center for Medicine in the Public Interest: "people mostly volunteered this data for “higher good” since the company was working with publicly funded or nonprofit institutions (and) not for a partnership with the big Pharma (Glaxo)" @drugwonks #hcldr |
| Rasu Shrestha MD MBA @RasuShrestha @Colin_Hung @EMRAnswers @kymlmartin @RossMartin @LGin412 @nickisnpdx @JoeBabaian @ShereesePubHlth @BoyleBJ Oh come on!! You ok Colin? #hcldr https://t.co/ti78RKW9ge |
| Alzheimer's Los Angeles @AlzheimersLA And then does it matter if the findings of that research (compensated or not) is accessible to everyone? #hcldr https://t.co/ZpJ2uEklT5 |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @credcollabgroup I really think, @23andMe has the right scope & good intentions. To that I say, "Take my data, have at it" But sharing is a vulnerability in itself due to a loss of control over where that data travels & how its ultimately used #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 RT @EMoriartyWade: T1. I was willing to consent to put my daughter’s genetic data in a longterm research study at a university medical center to help docs work toward possibly finding markers (without compensation), but I wouldn’t want to give data for free to a company to help them make $. #hcldr |
| Colin Hung @Colin_Hung @RasuShrestha @ShereesePubHlth @GraceCordovano @TheBingle Love that you are here Rasu #hcldr |
| burtrosen 🟦 @burtrosen @EMRAnswers @RasuShrestha @ShereesePubHlth @GraceCordovano @TheBingle @Colin_Hung Hi Linda! #hcldr |
| John Cloonan | Audacity Marketing | FIWOP Racing @johncloonan T2: Yes, it matters. With that said, I think in this case, there's not strong enough protections or consent, even with the voluntary provision of information. #hcldr |
| Patient Critical Co-op @PatientCritical A2: (2/2) There is no difference betwn voluntary & involuntary use of data w/o #informedconsent. “A lot of people paid $ to 23andMe...saying, ‘I’m ok if you use this info...not sure they understood...‘we’ll go to Glaxo...make a lot of $'” https://t.co/qVeVdJWYbx @drugwonks #hcldr |
| Barby Ingle Official @BarbyIngle T2: I think it doesn't matter because either way we paid for it. I have had DNA testing at 4 different companies in the last 2 years, I had no idea that they may sell our data, I or my insurance paid for each & the ones I got on my own I provided results to my providers. #hcldr |
| Kistein Monkhouse, MPA @KisteinM @credcollabgroup Welcome to the best healthcare tweet chat ☺️🙌 #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA RT @researchmatters: Yes--have been following and seeing how it is all unfurling. This has been tried so many times (#MillionVeteransProject, #NationalChildrensStudy, etc.). Keep on trying til they get it right? Or listen to Einstein's definition of insanity? #hcldr |
| Colin Hung @Colin_Hung @BrianLRMan @hcldr Totally agree with you Brian. Enough material here for 2 or 3 chats on this topic. #hcldr |
| JETS! ✈️ A Miniature Schnauzer in ABQ, New Mexico! @JetsSchnauzer Hmm. I wonder if my vet's EHR is participating in a similar transaction... #hcldr |
| Ken Taylor, RPIC @KenRayTaylor T2 No, I dont think it is ok for it to be sold by someone in a position prescribe the test. It could be prescribed for the wrong reason. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA RT @Colin_Hung: @pfanderson @23andMe T1 That's what makes this discussion so vital. I agree that we will see benefits as a society from the unlocking of this data. What's concerning is the degree of involvement of the people whose data is being used. I'm a bit torn on this #hcldr |
| Nick Adkins @nickisnpdx @ChronicallyJess @EMoriartyWade @hcldr @GSK @23andMe stay tuned for T3. #hcldr 😊 |
| Erin Moriarty Wade @EMoriartyWade This is a really excellent point and something most people would never think of...#hcldr |
| Colin Hung @Colin_Hung RT @hcldr: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor’s EHR) and then having it sold? #hcldr https://t.co/CXjBPAZ8mA |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl #hcldr T1 If people are to consent to sale of their genetic data, counseling on potential risks should be provided - free of charge. Risks to genetic relations, future children, relatives. Likely de-id'd data will soon be full re-identifiable = Disease discrimination risks... https://t.co/A8k5Z51GZg |
| PF Anderson @pfanderson@disabled.social @pfanderson @anthonynotleon @hcldr I've been hearing this a lot, but my thought is, how much would this test have cost me if I had NOT agreed to have my data monetized? #hcldr |
| Anthony Leon @anthonynotleon @EMoriartyWade How do you feel about the EHR, other HIT vendors, or the participating HIE selling off the information in a de-identified manner? Because that happens, often #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA Affirmative consent is everything. #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc @ColtonOrtolf @lauradianeappel @23andMe The company started out as a heritage/genealogy focused company and slid into healthcare. Now, they can't even get the testing right. BRCA testing is incomplete and misleading, gives a false impression actual genetic risk. https://t.co/iGgwhOxZJW #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @PatientCritical: A1: A1: "simply removing a name, address & SSN from a... record (NO LONGER PROTECTS) anonymity...data-mining tools can (ID) the indiv from,,,private medical records (AS PROVEN WHEN) Mass. governor William Weld (WAS ID'D IN ANONYMIZED) hospital records." https://t.co/Pp3Cji9VMc #hcldr |
| Virginia @PracticalHIT @hcldr #t2 #hcldr of course but if the data is protected and deidentified... |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 RT @hcldr: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor’s EHR) and then having it sold? #hcldr https://t.co/CXjBPAZ8mA |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @RasuShrestha: Should we all be asking: Should we all be asking: "Hey, is that my data you're selling?" Awesome and very current topic for tonight's #HCLDR chat. Full blog here by @Colin_Hung https://t.co/gwOsOExXfE https://t.co/hNO99XlvtM |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 T2 How is a patient able to decline permission for data in their EHR that they have no control over used by the healthcare system they access for care - seems a Hobson’s Choice https://t.co/cgz5IyJhB9 #hcldr https://t.co/Bhkqs7ZJGV |
| ChronicallyJess @ChronicallyJess T2: unless an organization can definitively prove that a contributor/patient FULLY understand and agreed to how data can/will/could possibly ever be used, the data should not be sold. Doesn’t matter how it is given. Taking advantage of the average citizen’s data is wrong #hcldr |
| Josephine Borrillo @70mq @pfanderson @23andMe but I read somewhere this morning an interesting article where the majority of people that bought the kit from 23andMe are wealthy. I think it said $200/kit. #hcldr |
| Duke Center for PHC @DukePHC T2 It makes a big difference whether or not the patient chose to disclose their information. Genetic information is biological data unique to individuals; thus companies should require permission from every single patient before sharing such personal sensitive information. #hcldr |
| Mariah Obiedzinski @MariahWrites T2: I'm baffled by this. In #healthcare #contentmarketing, we can't even market in certain capacities to patients by condition. How is SELLING their genetic data ethical or legal? #hcldr |
| Kate Warnock @mkatewarnock T2 100% YES it matters. I'm adding my personal data to a #breastcancer study but only after I read thru exactly what was collected + how it will be used. Just taking that same info w/o consent for corp gain = ugly biz practice. #hcldr |
| Enlightening Results 💡 @GraceCordovano T2) Majority of people do NOT know their personal health information is de-identified & sold. This is a shortcoming of HIPAA & lack of #HealthcareExpLiteracy. Signing a consent form for a bait-n-switch buisness model w/lack of transparency is unforgivable. #hcldr |
| Heather McCullen @H_SalemOaks @ShereesePubHlth @credcollabgroup @23andMe Is there a particular reason that you think they have good intentions? I don't have a well formed opinion of them, but I assume that all companies are acting amorally. #hcldr |
| Bingle @TheBingle @RasuShrestha @GraceCordovano You must live in a perfect world. What would you do if you were the pt that came up with answers but "the professionals" don't partner Or even anknowledge you? Albeit, some top people who are really bottom of barrel. #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @RasuShrestha: T1: T1: Honestly, I'm personally more concerned about HOW this was done. I'm all for data for research. But I'm not sure that many/most @23andMe customers (including me!) were even aware that this was possible! I'd have ok'd it if I had been asked - but I was not, was I?🤔 #HCLDR |
| Brent Reed @brentnreed T2 I would have less of a problem with my health information being sold if I had access to all of it, and could do whatever I want with it. #hcldr |
| Janet Kennedy @GetSocialHealth Yes, it matters but to whom? If you never know that it's used is it a "bear in the woods" issue? #HCLDR https://t.co/hBX0Ik52cj |
| ChronicallyJess @ChronicallyJess @mkatewarnock I got your back. 😂 #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @AlzheimersLA And we all know, the definition of "affirmed" & "informed" get fuzzy depending who's checking #hcldr |
 | dighealthdoc @gmathews71 @ShereesePubHlth @credcollabgroup @23andMe I think they and other companies like @patientslikeme have the same problem - unless you have a subscription model in place and a good price point, its hard to keep revenues coming in and the lights on. Compromises sometimes get made..hence the loose legalese..#hcldr |
| Josephine Borrillo @70mq RT @GraceCordovano: T2) Majority of people do NOT know their personal health information is de-identified & sold. This is a shortcoming of HIPAA & lack of #HealthcareExpLiteracy. Signing a consent form for a bait-n-switch buisness model w/lack of transparency is unforgivable. #hcldr |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans @drnic1 This entire situation is really no different from FB/Cambridge Analytica. 23andme has already added a level of mistrust to start. #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @Colin_Hung @pfanderson @23andMe Great unlock improvements in healthcare but how do you prevent the data being used against you #genomics #Hcldr |
| Nick Adkins @nickisnpdx @RasuShrestha @Colin_Hung @EMRAnswers @kymlmartin @RossMartin @LGin412 @JoeBabaian @ShereesePubHlth @BoyleBJ cc @AaronWatson59 @LGin412 @Dinky_Dana @PittsTechAudrey #getthegifout #hcldr |
| Patient Critical Co-op @PatientCritical A2: De-identified sounds good, but it's just the new 'redacted'. It only *sounds* good. Blurred photos can be un-blurred, de-ID'd can be easily re-ID'd. Again, #bigdata gets ahead of #regulations & co's benefit, #patientdata gets co-opted. #hcldr https://t.co/K31toYf4xg |
| Sunnie Southern @SunnieSouthern T2: Yes! I think it does matter. I don't believe that something that was made by my body and is unique to me should ever be sold or given away w/ out my explicit consent. Ask me tranparently and give me a chance to say yes or no. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @SandraWoodsMtl: #hcldr T1 If people are to consent to sale of their genetic data, counseling on potential risks should be provided - free of charge. Risks to genetic relations, future children, relatives. Likely de-id'd data will soon be full re-identifiable = Disease discrimination risks... https://t.co/A8k5Z51GZg |
| Mariah Obiedzinski @MariahWrites RT @GraceCordovano: T2) Majority of people do NOT know their personal health information is de-identified & sold. This is a shortcoming of HIPAA & lack of #HealthcareExpLiteracy. Signing a consent form for a bait-n-switch buisness model w/lack of transparency is unforgivable. #hcldr |
| Josephine Borrillo @70mq RT @GetSocialHealth: Yes, it matters but to whom? If you never know that it's used is it a "bear in the woods" issue? #HCLDR https://t.co/hBX0Ik52cj |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @PatientCritical: A2: A2: (2/2) There is no difference betwn voluntary & involuntary use of data w/o #informedconsent. “A lot of people paid $ to 23andMe...saying, ‘I’m ok if you use this info...not sure they understood...‘we’ll go to Glaxo...make a lot of $'” https://t.co/qVeVdJWYbx @drugwonks #hcldr |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans RT @hcldr: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor’s EHR) and then having it sold? #hcldr https://t.co/CXjBPAZ8mA |
| Anthony Leon @anthonynotleon @hcldr A2: This annoys me coming from the HIE world. I would venture to guess more than most people have no idea their information is being sold by the EHR, HIEs, and the HIT vendors involved in the aggregation of data. #HCLDR |
| Enlightening Results 💡 @GraceCordovano @Colin_Hung @BrianLRMan @hcldr I need until at least next Tues 😂. #hcldr |
| Colin Hung @Colin_Hung @pfanderson @anthonynotleon @hcldr From a financial standpoint you are absolutely correct. I'm all for unlocking data for the good of all. But I think how that data was going to be shared could have been handled better. I actually think many would have opted in had customers been asked #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc RT @hcldr: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor’s EHR) and then having it sold? #hcldr https://t.co/CXjBPAZ8mA |
| Erin Moriarty Wade @EMoriartyWade RT @MariahWrites: T2: T2: I'm baffled by this. In #healthcare #contentmarketing, we can't even market in certain capacities to patients by condition. How is SELLING their genetic data ethical or legal? #hcldr |
| Heather McCullen @H_SalemOaks @TheBingle @RasuShrestha @GraceCordovano We don't, but I like to think we're working on it. #hcldr |
| Kate Warnock @mkatewarnock @ColtonOrtolf @NIH Thanks for this! #hcldr |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T2 No, I dont think it is ok for it to be sold by someone in a position prescribe the test. It could be prescribed for the wrong reason. #hcldr |
| Nick Adkins @nickisnpdx RT @ChronicallyJess: @EMoriartyWade @hcldr @GSK @23andMe SAY IT AGAIN FOR THE PEOPLE IN THE BACK! Patient compensation for contributions to research is so lacking. #hcldr |
| Barby Ingle Official @BarbyIngle RT @KenRayTaylor: T2 No, I dont think it is ok for it to be sold by someone in a position prescribe the test. It could be prescribed for the wrong reason. #hcldr |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: T2: T2: I think it doesn't matter because either way we paid for it. I have had DNA testing at 4 different companies in the last 2 years, I had no idea that they may sell our data, I or my insurance paid for each & the ones I got on my own I provided results to my providers. #hcldr |
| Sunnie Southern @SunnieSouthern T2: Copy rights protect our ideas, words, images, graphics, artwork etc. even without filing any paperwork. We should have the same rights over our bodies. #hcldr |
| Enlightening Results 💡 @GraceCordovano @Colin_Hung @RasuShrestha @ShereesePubHlth @TheBingle Great to see you Rasu! It's a juicy topic. #hcldr |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T2: T2: I think it doesn't matter because either way we paid for it. I have had DNA testing at 4 different companies in the last 2 years, I had no idea that they may sell our data, I or my insurance paid for each & the ones I got on my own I provided results to my providers. #hcldr |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T2: T2: I think it doesn't matter because either way we paid for it. I have had DNA testing at 4 different companies in the last 2 years, I had no idea that they may sell our data, I or my insurance paid for each & the ones I got on my own I provided results to my providers. #hcldr |
| Barby Ingle Official @BarbyIngle RT @BarbyIngle: T2: T2: I think it doesn't matter because either way we paid for it. I have had DNA testing at 4 different companies in the last 2 years, I had no idea that they may sell our data, I or my insurance paid for each & the ones I got on my own I provided results to my providers. #hcldr |
| Rasu Shrestha MD MBA @RasuShrestha T2: YES! Trust is the most expensive commodity. Tread carefully. I believe that increasingly, esp in this age of #AI and #data, HOW we do business will be as important (if not more) than what we do. Businesses should go out of their way to build trust, not break it. #HCLDR |
| Mariah Obiedzinski @MariahWrites @StuEddins1 or @KeywordHealth - remind me to ask about this tomorrow! #hcldr |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans RT @GraceCordovano: T2) Majority of people do NOT know their personal health information is de-identified & sold. This is a shortcoming of HIPAA & lack of #HealthcareExpLiteracy. Signing a consent form for a bait-n-switch buisness model w/lack of transparency is unforgivable. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA Thinking about Henrietta Lacks. The conversation about informed consent + making money off of someone's biodata from which they don't benefit at all is not new. #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @drlfarrell If I’d known I’d have picked an Irish #whiskey I honor #hcldr |
| Larry Gioia 🔠 @LGin412 @nickisnpdx @RasuShrestha @Colin_Hung @EMRAnswers @kymlmartin @RossMartin @JoeBabaian @ShereesePubHlth @BoyleBJ @AaronWatson59 @Dinky_Dana @PittsTechAudrey Rasu keeps the #getthegifout game on point tonight in #hcldr Tweetchat! And this surprises you? :-D #pinksocks |
| Colin Hung @Colin_Hung @anthonynotleon @hcldr T2 So true Anthony! Most don't have a clue that their health data is already "out there" with a broker being used for other research WITHOUT them knowing. At least @23andMe was up front about it #hcldr |
| ChronicallyJess @ChronicallyJess RT @SunnieSouthern: T2: T2: Copy rights protect our ideas, words, images, graphics, artwork etc. even without filing any paperwork. We should have the same rights over our bodies. #hcldr |
| Sarah Greene @researchmatters A2: We give up ("share") so much information today that it's hard to imagine putting the voluntary vs. involuntary genie back in the bottle. The presumed calculus is that we get something in return for it, but the asymmetry is truly appalling when you think about it. #hcldr |
 | The Roctor,MD @TheRoctor_MD @ColtonOrtolf Well, like I said, you cannot de-identify DNA data. DNA is what makes you you. #hcldr |
| HCLDR Moderator @hcldr Repeating T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor’s EHR) and then having it sold? #hcldr https://t.co/Ok4KWFjkPQ |
| Enlightening Results 💡 @GraceCordovano @Colin_Hung @pfanderson @anthonynotleon @hcldr I would love to know how many "consenting" users opted out after the headlines broke. #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc RT @RasuShrestha: T2: T2: YES! Trust is the most expensive commodity. Tread carefully. I believe that increasingly, esp in this age of #AI and #data, HOW we do business will be as important (if not more) than what we do. Businesses should go out of their way to build trust, not break it. #HCLDR |
| Anthony Leon @anthonynotleon @pfanderson @hcldr My honest feeling, it would have cost exactly the same. Unless 23&me has come out and said it made a lower price with the assumption that the data would be sold later on. #hcldr |
| Patient Critical Co-op @PatientCritical A2: This discussion has echoes of insurance companies using the free apple watch they gift clients to collect data that can be used to reject their claims. There are no effective #patientdata or ANY data protections at present. #hcldr #shellgame https://t.co/9KGe52eUl7 |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans RT @MariahWrites: T2: T2: I'm baffled by this. In #healthcare #contentmarketing, we can't even market in certain capacities to patients by condition. How is SELLING their genetic data ethical or legal? #hcldr |
| ElizabethKelly, Ph.D @Elizabe85727641 T2 Yes, it matters bc use of Pt information requires a certain level of literacy & data knowledge on part of Pt, plus clear statements of data management,over what period of time, storage, & its replication. #hcldr |
| Colin Hung @Colin_Hung RT @GetSocialHealth: Yes, it matters but to whom? If you never know that it's used is it a "bear in the woods" issue? #HCLDR https://t.co/hBX0Ik52cj |
| Alzheimer's Los Angeles @AlzheimersLA @ShereesePubHlth We should amend the original tweet: Informed & affirmative consent is everything. #hcldr |
| Bingle @TheBingle @hcldr T2 It would matter to the patient. However, some unscrupulous, unethical top professionals wouldn't think at all about taking the info. Actually, true story. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @PatientCritical @drugwonks But if folk are going to monetize the data, they could do a LOT worse the GSK, who have exceptional corporate ethics in place https://t.co/UxDYQ4g3cL | https://t.co/VswpR0S71b (not that mistakes have not occurred, but they try) #hcldr |
| Mariah Obiedzinski @MariahWrites RT @hcldr: Repeating T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: Repeating T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor’s EHR) and then having it sold? #hcldr https://t.co/Ok4KWFjkPQ |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans RT @DukePHC: T2 It makes a big difference whether or not the patient chose to disclose their information. Genetic information is biological data unique to individuals; thus companies should require permission from every single patient before sharing such personal sensitive information. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA RT @ShereesePubHlth: @AlzheimersLA And we all know, the definition of "affirmed" & "informed" get fuzzy depending who's checking #hcldr |
| Mariah Obiedzinski @MariahWrites Excellent point. #hcldr |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T2 No, I dont think it is ok for it to be sold by someone in a position prescribe the test. It could be prescribed for the wrong reason. #hcldr |
 | Al @Ali_HHNYC RT @RasuShrestha: T2: T2: YES! Trust is the most expensive commodity. Tread carefully. I believe that increasingly, esp in this age of #AI and #data, HOW we do business will be as important (if not more) than what we do. Businesses should go out of their way to build trust, not break it. #HCLDR |
| Erin Moriarty Wade @EMoriartyWade T2. I don’t think either one is okay, but I do think selling EHR data without patient consent is worse. On some level, people probably realize there is a certain element of risk in voluntarily doing 23andme or https://t.co/rncm0FUZab, etc, whether privacy or health data. #hcldr |
| Josephine Borrillo @70mq @npiercePhDRN excellent point! that is the difference. It is the selling to a third party that is not right #hcldr |
| burtrosen 🟦 @burtrosen @EMRAnswers @RasuShrestha @ShereesePubHlth @GraceCordovano @TheBingle @Colin_Hung so far so good and a chance to be on #hcldr is a nice bonus! |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @ShereesePubHlth: @credcollabgroup I really think, @23andMe has the right scope & good intentions. To that I say, "Take my data, have at it" But sharing is a vulnerability in itself due to a loss of control over where that data travels & how its ultimately used #hcldr |
| Sarah Greene @researchmatters x1000 #hcldr |
| Colin Hung @Colin_Hung T2 Totally with you on this @brentnreed !!! #hcldr |
| John Cloonan | Audacity Marketing | FIWOP Racing @johncloonan RT @AlzheimersLA: Thinking about Henrietta Lacks. The conversation about informed consent + making money off of someone's biodata from which they don't benefit at all is not new. #hcldr |
| Brent Reed @brentnreed T2 A friend of mine (also a health care professional) recently requested his health information and I couldn’t believe all of the hoops they made him jump through (1 of 2). #hcldr |
 | Matthew Loxton is also on Mastodon @mloxton Lurking on #hcldr |
| Mariah Obiedzinski @MariahWrites RT @RasuShrestha: T2: T2: YES! Trust is the most expensive commodity. Tread carefully. I believe that increasingly, esp in this age of #AI and #data, HOW we do business will be as important (if not more) than what we do. Businesses should go out of their way to build trust, not break it. #HCLDR |
| Nick Adkins @nickisnpdx RT @RasuShrestha: T2: T2: YES! Trust is the most expensive commodity. Tread carefully. I believe that increasingly, esp in this age of #AI and #data, HOW we do business will be as important (if not more) than what we do. Businesses should go out of their way to build trust, not break it. #HCLDR |
| Brent Reed @brentnreed T2 I can’t imagine how challenging it must be for someone who isn’t already intimately familiar with the health care system (2 of 2). #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 RT @SunnieSouthern: T2: T2: Copy rights protect our ideas, words, images, graphics, artwork etc. even without filing any paperwork. We should have the same rights over our bodies. #hcldr |
| Colin Hung @Colin_Hung RT @EMoriartyWade: T2. I don’t think either one is okay, but I do think selling EHR data without patient consent is worse. On some level, people probably realize there is a certain element of risk in voluntarily doing 23andme or https://t.co/rncm0FUZab, etc, whether privacy or health data. #hcldr |
| Mariah Obiedzinski @MariahWrites RT @brentnreed: T2 A friend of mine (also a health care professional) recently requested his health information and I couldn’t believe all of the hoops they made him jump through (1 of 2). #hcldr |
| Bingle @TheBingle @Colin_Hung @anthonynotleon @hcldr @23andMe Fascinating. Probably many could go crazy if they knew how much is "out there". #hcldr |
| Mariah Obiedzinski @MariahWrites RT @Colin_Hung: T2 Totally with you on this @brentnreed !!! #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @ShereesePubHlth @credcollabgroup @23andMe True. But that's true in general, isn't it? And what's the alternative? Don't have the test, don't have the info, don't have the discoveries, don't have the opportunities. Is @AllofUsResearch going to be any better? #hcldr |
| Cred Collab Group @credcollab T2: Yes it absolutely matters! But unfortunately I am not sure if we can control that. I think the attempt should be made to inform someone at the very least. #hcldr |
| Nick Adkins @nickisnpdx @gmathews71 ur gonna love T3! #hcldr 😊✨ |
 | Wes Wilson @WesleyWilson @mloxton also lurking #hcldr today... very busy day at work... |
| Enlightening Results 💡 @GraceCordovano @gmathews71 We need to have the choice to: 👉grant access & be compensated for said access 👉decline access 👉donate access altruistically I also want to see a log of who is accessing my data, how often, when, etc. #hcldr #healthocracy @S4PM |
| The Roctor,MD @TheRoctor_MD @EMoriartyWade @hcldr @GSK @23andMe And, the money will taint their stewardship of your information. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @researchmatters: Yes--have been following and seeing how it is all unfurling. This has been tried so many times (#MillionVeteransProject, #NationalChildrensStudy, etc.). Keep on trying til they get it right? Or listen to Einstein's definition of insanity? #hcldr |
| Mariah Obiedzinski @MariahWrites RT @EMoriartyWade: T2. I don’t think either one is okay, but I do think selling EHR data without patient consent is worse. On some level, people probably realize there is a certain element of risk in voluntarily doing 23andme or https://t.co/rncm0FUZab, etc, whether privacy or health data. #hcldr |
| Patient Critical Co-op @PatientCritical IMO it's not the company, or even the individual use case...it's the precedent and the 'normalizing' of the practice of using #patientdata without explicit rights, and without EULA's that aren't full of legal wiggle room for the other party. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA Different generations have different relationships to technology and privacy... Wondering if we'll see generational differences in how people feel about all this. #hcldr https://t.co/dPLoNW1328 |
| Kez! @denniskenez RT @brentnreed: T2 I can’t imagine how challenging it must be for someone who isn’t already intimately familiar with the health care system (2 of 2). #hcldr |
| Colin Hung @Colin_Hung @EMoriartyWade T2 And that's not even getting into Claims data being bought and sold since the dawn of electronic billing. That's deidentified health data too, yet few know this has been happening for years. #hcldr |
| Kate Warnock @mkatewarnock T2 Great point - others profiting from personal data is esp egregious when patients themselves can't access it. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @H_SalemOaks @credcollabgroup @23andMe Lol, well they are trying to help individuals use qualitative genotyping to detect select clinically relevant variants in the DNA. Ex. I have O- blood, & my family on my dad's side has a history of PACa. They could tell me my risk. But I wouldn't want them selling that #hcldr |
 | Jacobus Vanderwilt @kooswilt RT @drnic1: T1 As I said the same day - No revoking my authorization https://t.co/B48aLYfDif #hcldr https://t.co/e5bbazlx08 |
| Colin Hung @Colin_Hung RT @PatientCritical: IMO it's not the company, or even the individual use case...it's the precedent and the 'normalizing' of the practice of using #patientdata without explicit rights, and without EULA's that aren't full of legal wiggle room for the other party. #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @RasuShrestha Trust is like life - you on,y get one #Hcldr |
| Mariah Obiedzinski @MariahWrites RT @AlzheimersLA: Different generations have different relationships to technology and privacy... Wondering if we'll see generational differences in how people feel about all this. #hcldr https://t.co/dPLoNW1328 |
| Michael Joseph, PMP @HealthData4All RT @hcldr: Repeating T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: Repeating T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor’s EHR) and then having it sold? #hcldr https://t.co/Ok4KWFjkPQ |
| Colin Hung @Colin_Hung RT @GraceCordovano: @gmathews71 We need to have the choice to: 👉grant access & be compensated for said access 👉decline access 👉donate access altruistically I also want to see a log of who is accessing my data, how often, when, etc. #hcldr #healthocracy @S4PM |
| Mariah Obiedzinski @MariahWrites RT @GraceCordovano: @gmathews71 We need to have the choice to: 👉grant access & be compensated for said access 👉decline access 👉donate access altruistically I also want to see a log of who is accessing my data, how often, when, etc. #hcldr #healthocracy @S4PM |
| Cred Collab Group @credcollab I agree. WAY WORSE! @EMoriartyWade #hcldr |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans @anthonynotleon @EMoriartyWade Unless it is clearly disclosed like they do with all The hipaa paperwork, IMO it’s still wrong and misleading. #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl #hcldr T2 Main differntiator for me is genetic vs non-genetic data. Nothing but genetic data has potential repercussions for entire set of relations & future relations... True consent requires understanding of this... https://t.co/XOr9FI6xfc |
| PF Anderson @pfanderson@disabled.social @pfanderson @Colin_Hung @23andMe That's part of the whole opt-in aspect, and offering people the opportunity to engage via the forums. Of course, it isn't perfect, but we are going to stumble on the way to answers. I'm saying it would happen sooner or later, cd be a LOT worse #hcldr |
| Colin Hung @Colin_Hung @WesleyWilson @mloxton We're glad you're here "passively listening" to #hcldr Wes. Hope you don't have too much work to do and can enjoy a bit of your evening #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc RT @GraceCordovano: @gmathews71 We need to have the choice to: 👉grant access & be compensated for said access 👉decline access 👉donate access altruistically I also want to see a log of who is accessing my data, how often, when, etc. #hcldr #healthocracy @S4PM |
| Colin Hung @Colin_Hung RT @credcollabgroup: T2: T2: Yes it absolutely matters! But unfortunately I am not sure if we can control that. I think the attempt should be made to inform someone at the very least. #hcldr |
| Sarah Greene @researchmatters @pfanderson @PatientCritical @drugwonks Thanks for sharing this incredible resource! can't wait to check it out #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Good question. Has this even been a consideration? Are HIE's mininig/selling that info? #hcldr |
| Heather McCullen @H_SalemOaks @ShereesePubHlth @credcollabgroup @23andMe They also tell people what genetic population they most likely come from in a time where racial tests are close to the scariest thing I can think of. #hcldr |
| Erin Moriarty Wade @EMoriartyWade @anthonynotleon Hmm, not super excited about that since I don’t see an upside for her as a patient. The research study she is part of gives me a tiny glimmer of hope that some kids in the future might suffer less than she did during the lengthy diagnosis of a rare disease. #hcldr |
| Bingle @TheBingle @npiercePhDRN T2 There's irony or comedy somewhere with a researcher embedded in a hospital! #hcldr |
| Colin Hung @Colin_Hung RT @pfanderson: @Colin_Hung @23andMe That's part of the whole opt-in aspect, and offering people the opportunity to engage via the forums. Of course, it isn't perfect, but we are going to stumble on the way to answers. I'm saying it would happen sooner or later, cd be a LOT worse #hcldr |
| Cred Collab Group @credcollab @PatientCritical Such a great point. But is that really working? #hcldr |
 | Rafael Grossmann, MD, MHDS, FACS 🇻🇪🇺🇸 @ZGJR RT @RasuShrestha: T2: T2: YES! Trust is the most expensive commodity. Tread carefully. I believe that increasingly, esp in this age of #AI and #data, HOW we do business will be as important (if not more) than what we do. Businesses should go out of their way to build trust, not break it. #HCLDR |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @drnic1 @drlfarrell Try Yellow Spot, but don't pour any first Luam I think...#hcldr |
| Mariah Obiedzinski @MariahWrites @GraceCordovano @gmathews71 @S4PM If it's explained properly, I bet many people would donate their #genetic data for the greater good. I would - if given a CHOICE. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @H_SalemOaks @credcollabgroup @23andMe That's also true #hcldr |
 | Sue Woods MD MPH 💙 @SueWoods @researchmatters Big difference using data like #MillionVeteransProject, working hard to get a representative #VA volunteer popn to help that popn (why Vets enroll) and 23&Me data for profit #Hcldr |
| Wes Wilson @WesleyWilson has anyone been following the new digital health stuff in Australia? removes a lot of silos for #healthcare and #pts BUT there is a big controversy over if law enforcement will also get access to the data without a warrant #hcldr |
| Kate Warnock @mkatewarnock +1. Particularly in the world we live in today. #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @Jim_TheRocktor: @EMoriartyWade @hcldr @GSK @23andMe And, the money will taint their stewardship of your information. #hcldr |
| ChronicallyJess @ChronicallyJess @TheBingle @hcldr I think that a focus on profit with little regard to the long-term ramifications of selling patient data will be the default approach until we do something to stop it from happening. #hcldr |
| The Roctor,MD @TheRoctor_MD @MariahWrites If you want to sell ur data to GSK that's fine. But 23n(not)Me can't. #hcldr |
| Sarah Greene @researchmatters Yes, Sue--I agree. I was referencing the similarities between gov't sponsored efforts to build ginormous research cohorts, and the relative level of success. #hcldr https://t.co/nsOPn21GZU |
| PF Anderson @pfanderson@disabled.social @pfanderson @H_SalemOaks Before I put my data online in openSNP https://t.co/HYZYZ93G4X I talked with all living 1st degree relatives & got permission #hcldr |
| Cred Collab Group @credcollab @ShereesePubHlth Scary to think about that. #hcldr |
| Larry Gioia 🔠 @LGin412 @dsgold @GraceCordovano @Colin_Hung @pfanderson @anthonynotleon @hcldr @chrissyfarr #hcldr https://t.co/vW5AzlZRGy |
| Enlightening Results 💡 @GraceCordovano T2) As we continue to try empower patients & encourage them to engage in their care, utilize new technologies & tools, this is a major step backwards in building trust. We need to build partnership, not meet bottom-lines via gaps in legalese. Disappointing. #hcldr #PtExp #PtEng |
| Kimberly George @kimberlyanngeo RT @researchmatters: Yes--have been following and seeing how it is all unfurling. This has been tried so many times (#MillionVeteransProject, #NationalChildrensStudy, etc.). Keep on trying til they get it right? Or listen to Einstein's definition of insanity? #hcldr |
| Kimberly George @kimberlyanngeo RT @ShereesePubHlth: @credcollabgroup I really think, @23andMe has the right scope & good intentions. To that I say, "Take my data, have at it" But sharing is a vulnerability in itself due to a loss of control over where that data travels & how its ultimately used #hcldr |
| JETS! ✈️ A Miniature Schnauzer in ABQ, New Mexico! @JetsSchnauzer Worst thing healthcare can do is "propertize" patient data. It is a slick & glib marketing campaign by, in this case, ill-informed thought leaders. Data is very different from physical property. Traditional case law regarding property, applied to patient data is a mistake! #hcldr https://t.co/PnjKbAX03D |
| Rasu Shrestha MD MBA @RasuShrestha Remembering my friend @MightyCasey as we discuss this important topic on #HCLDR tonight. Read this important blog if you have not devoured it yet: https://t.co/2WsDjkZA2p https://t.co/azdcpiOC2W |
| Mariah Obiedzinski @MariahWrites @gmathews71 @TheBingle @hcldr Thank you for this. Truly the crux of the issue. #hcldr |
| Colin Hung @Colin_Hung @MariahWrites @GraceCordovano @gmathews71 @S4PM T2 That's where I think 23andMe underestimated customers and overestimated the fear. How hard/expensive in the grand scheme of things would it have been to mount an "opt-in" campaign appealing to customers good will? Much less than the flack IMHO #hcldr |
| Colin Hung @Colin_Hung RT @RasuShrestha: Remembering my friend @MightyCasey as we discuss this important topic on #HCLDR tonight. Read this important blog if you have not devoured it yet: https://t.co/2WsDjkZA2p https://t.co/azdcpiOC2W |
| Janet Kennedy @GetSocialHealth RT @WesleyWilson: has anyone been following the new digital health stuff in Australia? removes a lot of silos for #healthcare and #pts BUT there is a big controversy over if law enforcement will also get access to the data without a warrant #hcldr |
| HCLDR Moderator @hcldr Really interesting tweets on #hcldr right now. Let’s get ready for T3 in just 1 minute! |
| Mariah Obiedzinski @MariahWrites RT @GraceCordovano: T2) As we continue to try empower patients & encourage them to engage in their care, utilize new technologies & tools, this is a major step backwards in building trust. We need to build partnership, not meet bottom-lines via gaps in legalese. Disappointing. #hcldr #PtExp #PtEng |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 RT @RasuShrestha: Remembering my friend @MightyCasey as we discuss this important topic on #HCLDR tonight. Read this important blog if you have not devoured it yet: https://t.co/2WsDjkZA2p https://t.co/azdcpiOC2W |
| Larry Gioia 🔠 @LGin412 @hcldr Ready player one! #hcldr |
| The Roctor,MD @TheRoctor_MD @ShereesePubHlth EHR data is diff tho than DNA data. #hcldr |
| Cred Collab Group @credcollab Interesting. #hcldr |
| Anthony Leon @anthonynotleon @dsgold @GraceCordovano @Colin_Hung @pfanderson @hcldr @chrissyfarr Thoughts on a larger pharma co becoming a National Registry (I'll leave the type blank ). They will collect a ton of patient information (CCDs and more) which also includes medication, dosages, etc (of competitors). Are they really not going to act on this info? #HCLDR |
| Patient Critical Co-op @PatientCritical RT @RasuShrestha: Remembering my friend @MightyCasey as we discuss this important topic on #HCLDR tonight. Read this important blog if you have not devoured it yet: https://t.co/2WsDjkZA2p https://t.co/azdcpiOC2W |
| Erin Moriarty Wade @EMoriartyWade @dsgold I’m sure you are right. But at the moment that’s not on my list of things to worry about since our situation is pretty complicated. #hcldr |
| Heather McCullen @H_SalemOaks @AlzheimersLA It'll be interesting to see. I think younger generations will simultaneously be more careful and also more accepting. For example, I've accepted that Facebook listens to everything I do, but if I need to communicate something that needs to stay a secret I use signal #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @researchmatters @PatientCritical @drugwonks The Access to Medicine report cards are interesting. #hcldr |
| Sunnie Southern @SunnieSouthern @dsgold T2: Also, how many are familiar w/ Henrietta Lacks? If you don't know her & her story, please explore. I don't urge people often, but I feel compelled to in this case. For all that we did to her and her family, we can at least remember her. https://t.co/XQR1suyxVr #HCLDR |
| JETS! ✈️ A Miniature Schnauzer in ABQ, New Mexico! @JetsSchnauzer Of course, I'm just a puppy #hcldr |
| Mariah Obiedzinski @MariahWrites RT @Jim_TheRocktor: @MariahWrites If you want to sell ur data to GSK that's fine. But 23n(not)Me can't. #hcldr |
| dighealthdoc @gmathews71 @dsgold @EMoriartyWade @IQVIA_global @LexisNexis would agree...#my31 #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 RT @WesleyWilson: has anyone been following the new digital health stuff in Australia? removes a lot of silos for #healthcare and #pts BUT there is a big controversy over if law enforcement will also get access to the data without a warrant #hcldr |
| HCLDR Moderator @hcldr T3 If a company asks each patient for permission to sell their data does it make it okay in your mind? Or does the company have to go further (ie: split the proceeds)? #hcldr https://t.co/ZIpDBSTYK4 |
| Kate Warnock @mkatewarnock @EMoriartyWade @anthonynotleon I think that altruism is exactly why anyone would want to contribute their data - thank you for having that notion with your daughter! #hcldr |
 | Jamie Roger @JamieRoger8 Sorry I'm late tonight, looks like a pretty good conversation so far! Jamie from CT here #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @GraceCordovano @gmathews71 @S4PM This seems intuitive but in fact, because data has become so profitable, organizations really have highjacked what should be permission-based activities. #hcldr |
| Cred Collab Group @credcollab @MariahWrites @GraceCordovano @gmathews71 @S4PM Yes but the key word is CHOICE for sure! #hcldr |
| Brent Reed @brentnreed Similar to an IRB application, where you have to justify the benefits of the research. If you can't benefit the participants directly, you'd better be contributing to the common good. #hcldr |
| Larry Gioia 🔠 @LGin412 T3: In lite of the @23andMe @GSK news, I remain hopeful that collective energy can be directed towards the role of #blockchain in the quest for #ethical, #compliant, and mutually beneficial #data exchange for good. I think companies like @instartoken are onto something! #hcldr |
| dighealthdoc @gmathews71 @RasuShrestha @MightyCasey @hcldr @Colin_Hung @JoeBabaian @nickisnpdx @andrewintech @boltyboy @mikebiselli @HealthEugene @DrSimpsonHSR @drnic1 ...Can I get a red one with says "Keep Calm and Don't Sell Your Data" ?? #hcldr |
| Barby Ingle Official @BarbyIngle T3. I think if they ask and the patient gives permission then its OK. But I do think that they should give at least offer a discount to those who say ok. #hcldr |
| Enlightening Results 💡 @GraceCordovano @Colin_Hung @MariahWrites @gmathews71 @S4PM Not hard at all. That point alone makes this feel incredibly slimy, unprofessional, & inexcusable. They had a great opportunity to set and ethical standard. Disappointing to see such poor decision making. #hcldr |
| Nick Adkins @nickisnpdx RT @RasuShrestha: Remembering my friend @MightyCasey as we discuss this important topic on #HCLDR tonight. Read this important blog if you have not devoured it yet: https://t.co/2WsDjkZA2p https://t.co/azdcpiOC2W |
| Colin Hung @Colin_Hung @gmathews71 @dsgold @EMoriartyWade @IQVIA_global @LexisNexis T2 THOSE companies scare me with the amount of data they have collected. But they have done it legally through the sources they have access to. Built multibillion dollar businesses on other people's data #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 T3 I’m with @RichieEtwaru and want full control of my data My inherent data is my property. @hu_manityco #My31 #hcldr https://t.co/DyOSeCTK5Q https://t.co/5a3TdfOgkE |
| Heather McCullen @H_SalemOaks T3: As long as they disclose it, and it's opt-in it's ok in my mind. It's not preferable, they should find some way to compensate patients, perhaps by decreasing the price of the product or even just sharing important/interesting findings made using the data. #hcldr |
| Erin Moriarty Wade @EMoriartyWade @mloxton Glad to see you @mloxton ! #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @70mq @23andMe That's the current price. Was only $79 when I got it, and when I got it for my kids, and when my sister got it ... Lots of early adopters weren't so rich #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 Wow that’s another sad crushing indictment of lack of progress #Hcldr |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans @johncloonan Glad you’re safe tweeting! You might have, Marietta always seems to get the bulk of the bad weather and traffic. Lol. But then again I didn’t have to drive in it so I can’t complain! #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc RT @hcldr: T3 If a company asks each patient for permission to sell their data does it make it okay in your mind? Or does the company have to go further (ie: split the proceeds)? #hcldr https://t.co/ZIpDBSTYK4 |
| Patient Critical Co-op @PatientCritical A3: I knowingly pay Google with my data for Gmail, Search, Android, etc but “When two for-profit companies enter into an agreement where the jewel in the crown is your gene sequence & you (pay) I think that’s upside down.” https://t.co/462NDWJBvS #hcldr https://t.co/ubhMsbR5YQ |
| Sunnie Southern @SunnieSouthern @Colin_Hung @MariahWrites @GraceCordovano @gmathews71 @S4PM T2 Colin, once again I 100% agree! Tranparent informed consent is key. Require companies to engage and educate people on the value exchange and let us say yes instead of having to figure out how to say no. #hcldr |
| Sarah Greene @researchmatters Good to "see" you, Larry! How's your little guy doing? #hcldr |
| Laura Appel @lauradianeappel Big difference between aggregating how many people having #cabg procedure in a referral region and #DNA information. Not sure how #DNA is truly de-identified. #hcldr |
| Sunnie Southern @SunnieSouthern RT @Colin_Hung: @MariahWrites @GraceCordovano @gmathews71 @S4PM T2 That's where I think 23andMe underestimated customers and overestimated the fear. How hard/expensive in the grand scheme of things would it have been to mount an "opt-in" campaign appealing to customers good will? Much less than the flack IMHO #hcldr |
| Ken Taylor, RPIC @KenRayTaylor T3 I think the patient should have 1st right to make money from there own data. Splitting proceeds would be ok with me if i didn't have to do any of the work to sell it. #hcldr |
| Janet Kennedy @GetSocialHealth How far will the data travel? Will it stop at GSK or will it it turn into lots of little datasets? #HenriettaLacks #HCLDR |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @gmathews71 I assumed they were headed that way when we initially started seeing ads in EHRs. Everything is for sale as long as we can get it to the almighty cloud #hcldr |
| Sunnie Southern @SunnieSouthern RT @RasuShrestha: Remembering my friend @MightyCasey as we discuss this important topic on #HCLDR tonight. Read this important blog if you have not devoured it yet: https://t.co/2WsDjkZA2p https://t.co/azdcpiOC2W |
| Anthony Leon @anthonynotleon @AngelaHemans @EMoriartyWade I've seen offices roll it into the HIPAA forms. I'm from this world, so I know exactly what they mean by it, but I know the average patient doesn't. Then in the vendor paperwork with doc, they also put in clauses they can sell de-identified data. Patient gets $0 of this #hcldr |
| Enlightening Results 💡 @GraceCordovano @brentnreed This doesn't contribute to a common good either: data is skewed to represent only those who could afford the $200 kit & "research" efforts will be in line with GSKs internal strategy. #hcldr |
 | Richie Etwaru @RichieEtwaru RT @drnic1: T3 I’m with @RichieEtwaru and want full control of my data My inherent data is my property. @hu_manityco #My31 #hcldr https://t.co/DyOSeCTK5Q https://t.co/5a3TdfOgkE |
| Bingle @TheBingle @EMRAnswers T2 REMEMBER... There are people who work with patients data ... They can be gossips! #hcldr |
| Colin Hung @Colin_Hung @GraceCordovano @MariahWrites @gmathews71 @S4PM T3 I think it was expedient decision making. They just didn't see the problem or they decided the uproar is something they could handle. Maybe so, but now they have opened door for a competitor to set a higher bar and be rewarded for it. Why open your own crack in armor? #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @GraceCordovano: @Colin_Hung @pfanderson @anthonynotleon @hcldr I would love to know how many "consenting" users opted out after the headlines broke. #hcldr |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T3. I think if they ask and the patient gives permission then its OK. But I do think that they should give at least offer a discount to those who say ok. #hcldr |
| The Roctor,MD @TheRoctor_MD @gmathews71 @Colin_Hung @ShereesePubHlth Sharing data among docs that are involved in a patients care is one thing. No selling Goin on. That is what it's designed for. All other "sharing" needs scrutiny. #hcldr |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T3. I think if they ask and the patient gives permission then its OK. But I do think that they should give at least offer a discount to those who say ok. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @70mq @23andMe Also, typical cancer genetic testing through medical lab is on the order of thousands of dollars. Comparison shopping ... #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc @gmathews71 @RasuShrestha @MightyCasey @hcldr @Colin_Hung @JoeBabaian @nickisnpdx @andrewintech @boltyboy @mikebiselli @HealthEugene @DrSimpsonHSR @drnic1 It should probably say "Keep Calm and Don't Digitize Your Data" - it's then at risk of being monetized one way or another. #hcldr |
| Colin Hung @Colin_Hung RT @EMRAnswers: T3: |
| Matthew Katz, MD 🟦 @subatomicdoc RT @GraceCordovano: @brentnreed This doesn't contribute to a common good either: @brentnreed This doesn't contribute to a common good either: data is skewed to represent only those who could afford the $200 kit & "research" efforts will be in line with GSKs internal strategy. #hcldr |
| Colin Hung @Colin_Hung RT @SunnieSouthern: @Colin_Hung @MariahWrites @GraceCordovano @gmathews71 @S4PM T2 Colin, once again I 100% agree! Tranparent informed consent is key. Require companies to engage and educate people on the value exchange and let us say yes instead of having to figure out how to say no. #hcldr |
| Kez! @denniskenez @RasuShrestha @MightyCasey @hcldr @Colin_Hung @JoeBabaian @nickisnpdx @andrewintech @boltyboy @mikebiselli @HealthEugene @DrSimpsonHSR @drnic1 Will do follow #hcldr chat tonight. |
| burtrosen 🟦 @burtrosen T3: as long as i know why they want to sell it and to who, and it's my choice, it's fine #hcldr |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T3 I think the patient should have 1st right to make money from there own data. Splitting proceeds would be ok with me if i didn't have to do any of the work to sell it. #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @anthonynotleon: @AngelaHemans @EMoriartyWade I've seen offices roll it into the HIPAA forms. I'm from this world, so I know exactly what they mean by it, but I know the average patient doesn't. Then in the vendor paperwork with doc, they also put in clauses they can sell de-identified data. Patient gets $0 of this #hcldr |
| Larry Gioia 🔠 @LGin412 @researchmatters At this very moment, faded enough that I could sneak in a quick response to this very important #hcldr. Growing like a weed and bringing us sunshine on the daily. Thanks for asking - it's good to 'see' you too :-) When are you coming to visit us in #PGH? #pinksocks #ABCD |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: T3. I think if they ask and the patient gives permission then its OK. But I do think that they should give at least offer a discount to those who say ok. #hcldr |
| Sarah Greene @researchmatters @hcldr Seems like if Hollywood can figure out how to send royalty checks to Jennifer Aniston every time an episode of "Friends" airs on cable, someone should be able to figure out data royalties for patient contributors. #hcldr |
| Nick Adkins @nickisnpdx @KenRayTaylor 🎯 #hcldr |
| Enlightening Results 💡 @GraceCordovano @SunnieSouthern @dsgold I worked with #HeLa cells in grad school & read her story. It should have been required reading in grad school & for anyone in science. I treated my cell cultures with reverence after reading it #hcldr |
| Colin Hung @Colin_Hung @npiercePhDRN @MariahWrites @GraceCordovano @gmathews71 @S4PM T3 Not a stretch to see this happening. We already accept that social media posts can affect job prospects, insurance premiums and legal proceedings. Why not genetic data? #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @GraceCordovano @gmathews71 @S4PM This is all built in to @AllofUsResearch thank goodness. Well, probably not compensation, but the rest #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @drnic1: T3 I’m with @RichieEtwaru and want full control of my data My inherent data is my property. @hu_manityco #My31 #hcldr https://t.co/DyOSeCTK5Q https://t.co/5a3TdfOgkE |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl #hcldr I've been reading Dr. @EricTopol for a long time now, (if you haven't yet read "The Patient Will See You Now", you should!), and his view of patients owning & *controlling* their health data resonates with me. Level of Yes to Project x, but No to Project Y https://t.co/hrsEphRux3 |
| Patient Critical Co-op @PatientCritical A3: (1/ 2) what *RIGHTS* did I contract & what *USE* did I sign off on? If you opt for data to be used for not-for-profit or even a specific profit motive & it's LATER used for different means... that's a common violation. #hcldr https://t.co/UXmwApmCKh https://t.co/nxNLiPT2MV |
 | fredtrotter @fredtrotter RT @EMoriartyWade: T1. I was willing to consent to put my daughter’s genetic data in a longterm research study at a university medical center to help docs work toward possibly finding markers (without compensation), but I wouldn’t want to give data for free to a company to help them make $. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @credcollabgroup: T2: T2: Yes it absolutely matters! But unfortunately I am not sure if we can control that. I think the attempt should be made to inform someone at the very least. #hcldr |
| fredtrotter @fredtrotter RT @anthonynotleon: @EMoriartyWade How do you feel about the EHR, other HIT vendors, or the participating HIE selling off the information in a de-identified manner? Because that happens, often #hcldr |
| Josephine Borrillo @70mq so bummed I have to leave, will catch the transcript #hcldr such a great topic |
| Kate Warnock @mkatewarnock T3 I fear research would come to a screeching halt if we demanded split proceeds in the short term. But in the long term, yes, I think it's entirely fair that individs should benefit somehow from their contributions - even if its just a free copy of the research results. #hcldr |
| fredtrotter @fredtrotter RT @AngelaHemans: @anthonynotleon @EMoriartyWade Unless it is clearly disclosed like they do with all The hipaa paperwork, IMO it’s still wrong and misleading. #hcldr |
| fredtrotter @fredtrotter RT @anthonynotleon: @AngelaHemans @EMoriartyWade I've seen offices roll it into the HIPAA forms. I'm from this world, so I know exactly what they mean by it, but I know the average patient doesn't. Then in the vendor paperwork with doc, they also put in clauses they can sell de-identified data. Patient gets $0 of this #hcldr |
| Nick Adkins @nickisnpdx T3 hat tip @sam_debrouwer & @walterdebrouwer https://t.co/yyG7Y9PaAP (definitely watch the video) for giving everyone the opportunity to have a seat at the table to sell their own data. #hcldr https://t.co/Eb80rvJxcP |
| Mariah Obiedzinski @MariahWrites 💯⭐✔ #hcldr |
| Anthony Leon @anthonynotleon @mkatewarnock @EMoriartyWade I think that's the rub. We want our information to go to good and help in the future, but with everyone with their hands in the jar of our information, it's had to accept that they all have the same passion. Maybe they do? #HCLDR |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T3 I think the patient should have 1st right to make money from there own data. Splitting proceeds would be ok with me if i didn't have to do any of the work to sell it. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @GraceCordovano: @SunnieSouthern @dsgold I worked with #HeLa cells in grad school & read her story. It should have been required reading in grad school & for anyone in science. I treated my cell cultures with reverence after reading it #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @BrianLRMan @GraceCordovano @Colin_Hung @hcldr You need something stronger #hcldr https://t.co/SHU4ZvgWN9 |
| Sally James @jamesian T3 - Would be interesting to have transparency about how my data gets sold - to whom - how it is used - step by step? #hcldr Example would be useful in consent exchange. |
| Kimberly George @kimberlyanngeo RT @EMRAnswers: T3: |
| JETS! ✈️ A Miniature Schnauzer in ABQ, New Mexico! @JetsSchnauzer Issue is trust. Can they guarantee the data will only be used to benefit me, not harm me (practically the definition of the principle underlying trust) and that requires a lot of infrastructure, both in terms of transparency and actionability. #hcldr |
| ElizabethKelly, Ph.D @Elizabe85727641 T3 Pt consent to sell data appears to have contract implications. This should include time, type of information stated purpose, length of time to use data, notification each occasion use to whom for what purpose. Payment included.#hcldr |
| Enlightening Results 💡 @GraceCordovano @dsgold @Colin_Hung @gmathews71 @EMoriartyWade @IQVIA_global @LexisNexis Thank you #HIPAA for the legal disaster. Meanwhile, patients are waiting weeks for paper copies of their medical records. It's incomprehensible. #hcldr |
| Brent Reed @brentnreed T3 I think it also matters *when* companies ask for permission. Some patients might choose to go elsewhere if they know ahead of time that their data might get sold. #hcldr |
 | Elissa Hall, EdD @erhall1 RT @Ron_George: Utilising #socialmedia to educate and inform #healthcare professionals, policy-makers and the broader community in evidence-based healthcare https://t.co/eiPJ1Lec5k #hcsm #HCLDR #MedEd #medtwitter from @BMJ_EBM @AmyKKeir https://t.co/NbIg15rlnd |
| Larry Gioia 🔠 @LGin412 @KenRayTaylor Check my last tweet on this 🎯 #hcldr |
| Patient Critical Co-op @PatientCritical A3: (2/2) Here's my line in the sand: there's currently no way to get that data back once it's been hijacked. As long as #bigdata will outstrip legal protections, we need a digital framework to REVOKE rights retroactively when used outside intended scope OR be compensated. #hcldr |
| ChronicallyJess @ChronicallyJess T3: This level of detailed patient data is outside of healthcare as weve known it. As such, this should be an opportunity to involve the pt in innovative ways, as well. Patients should be organizing and making big asks - our data will be bringing BIG profits with it. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba T3 #ComeOnSon This is where "informed consent" gets tricky. We need to go further, not only to inform patients but to also compensate them for the use of that information. I catch feeling when I talk about this. I'm reminded of the #HENRIETTALACKS case. #hcldr https://t.co/MI0RQhSunf |
 | John @joltdude RT @ShereesePubHlth: T3 #ComeOnSon This is where "informed consent" gets tricky. We need to go further, not only to inform patients but to also compensate them for the use of that information. I catch feeling when I talk about this. I'm reminded of the #HENRIETTALACKS case. #hcldr https://t.co/MI0RQhSunf |
| HCLDR Moderator @hcldr Repeating T3 If a company asks each patient for permission to sell their data does it make it okay in your mind? Or does the company have to go further (ie: split the proceeds)? #hcldr https://t.co/c6XhjtSGRj |
| PF Anderson @pfanderson@disabled.social @pfanderson @dsgold @Colin_Hung @gmathews71 @EMoriartyWade @IQVIA_global @LexisNexis Hallelujah! Transparency is the big part of that, IMHO. #hcldr |
| Sue Woods MD MPH 💙 @SueWoods RT @SunnieSouthern: T2: T2: Copy rights protect our ideas, words, images, graphics, artwork etc. even without filing any paperwork. We should have the same rights over our bodies. #hcldr |
 | Emily K. Drake @EK_Drake Interesting topic tonight, #HCLDR! |
| Mariah Obiedzinski @MariahWrites @npiercePhDRN @Colin_Hung @GraceCordovano @gmathews71 @S4PM Particularly with all the racial issues today, it's downright horrifying what could happen to innocent consumers if their #data ends up in the wrong hands. #hcldr |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans RT @anthonynotleon: @AngelaHemans @EMoriartyWade I've seen offices roll it into the HIPAA forms. I'm from this world, so I know exactly what they mean by it, but I know the average patient doesn't. Then in the vendor paperwork with doc, they also put in clauses they can sell de-identified data. Patient gets $0 of this #hcldr |
 | Gamer Geek @GamerGeekNews RT @PatientCritical: A3: (2/2) Here's my line in the sand: A3: (2/2) Here's my line in the sand: there's currently no way to get that data back once it's been hijacked. As long as #bigdata will outstrip legal protections, we need a digital framework to REVOKE rights retroactively when used outside intended scope OR be compensated. #hcldr |
| Sarah Greene @researchmatters Aw man, I would love to come out there and see the many AMAZING things going on in your neck of the #PGH woods. I'll try to think up a "business case" for hanging out w/ you and @RasuShrestha #hcldr |
| Rasu Shrestha MD MBA @RasuShrestha We seriously need to have more conversations about ethics and moral compass; in this day and age of #digitalhealth. CMU had an amazing first of its kind conference earlier this year. #HCLDR #Pittsburgh @CarnegieMellon Checkout: #CMUAIEthics |
| Colin Hung @Colin_Hung Couldn't resist throwing this GIF into the #hcldr discussion. Who knew Gattaca would become a documentary? https://t.co/AtQSQ7jR7Q |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @hcldr: T3 If a company asks each patient for permission to sell their data does it make it okay in your mind? Or does the company have to go further (ie: split the proceeds)? #hcldr https://t.co/ZIpDBSTYK4 |
| Sally James @jamesian @Elizabe85727641 T-R-A-N-S-P-A-R-E-N-C-Y. #hcldr #patientsincluded @MightyCasey |
| Larry Gioia 🔠 @LGin412 @nickisnpdx @sam_debrouwer @walterdebrouwer @Colin_Hung @JoeBabaian @GraceCordovano @gmathews71 @ChronicallyJess @dsgold @kimberlyanngeo @EMRAnswers @anthonynotleon @andrewintech 👆and those guys too ... #hcldr #ABCD |
| John @joltdude @ShereesePubHlth Presume you saw the issue with #DSMA and consent recently... Still hasnt been addressed by the community #diabetes #hcldr |
| Colin Hung @Colin_Hung RT @pfanderson: @dsgold @Colin_Hung @gmathews71 @EMoriartyWade @IQVIA_global @LexisNexis Hallelujah! Transparency is the big part of that, IMHO. #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @burtrosen Is that still true if it’s sold to other companies who you don’t know or takeover that changes ownership #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba ...Just because you can use someone's data, merely by them entering your institution and signing a barely-read form, doesn't mean you should. #hcldr |
| Sunnie Southern @SunnieSouthern T3 I think companies should have to ask and we should have the right to determine what, who, when, for how long, & at what price/ value exchange we are willing to share data. I don't think government or governing bodies should set prices or stop people from giving. #hcldr |
| Colin Hung @Colin_Hung RT @SunnieSouthern: T3 I think companies should have to ask and we should have the right to determine what, who, when, for how long, & at what price/ value exchange we are willing to share data. I don't think government or governing bodies should set prices or stop people from giving. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @joltdude: @ShereesePubHlth Presume you saw the issue with #DSMA and consent recently... Still hasnt been addressed by the community #diabetes #hcldr |
| Colin Hung @Colin_Hung RT @ShereesePubHlth: ...Just because you can use someone's data, merely by them entering your institution and signing a barely-read form, doesn't mean you should. #hcldr |
| Heather McCullen @H_SalemOaks @Colin_Hung I did! Every bit of dystopian media I consumed as a child ... close to real life now. #hcldr |
| Erin Moriarty Wade @EMoriartyWade Or almost a year in my case, ha ha...#hcldr |
| Bingle @TheBingle @MariahWrites @npiercePhDRN @Colin_Hung @GraceCordovano @gmathews71 @S4PM There are a lot of 'wrong hands'. #hcldr |
 | DrLeeMcKnight @LeeMcKnight RT @drnic1: T3 I’m with @RichieEtwaru and want full control of my data My inherent data is my property. @hu_manityco #My31 #hcldr https://t.co/DyOSeCTK5Q https://t.co/5a3TdfOgkE |
 | Annette McKinnon @anetto RT @Colin_Hung: Before heading off to bed, why not check out the just-published #hcldr blog ahead of this week's chat - "Selling Healthcare Data" https://t.co/KVBZnMK3Ye Join us Tues 7/31 at 8:30pm ET https://t.co/9sPrqPw5zy |
| Patient Critical Co-op @PatientCritical A3: Again, like Nick said, t's not who gets my #healthdata, it's the NEXT transfer of #dataownership that upsets me. IE: "the Canada Border Services collecting DNA & using to establish their nationality...seeking to deport someone from Canada." https://t.co/AatUDV9c4p #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @hcldr T3: There may be personal financial rewards in the future, but if we demanded $$ for everything, how much research would get done? What research do we WANT to have done? Ask rare disease patients what they'd donate for answers #hcldr |
| Mariah Obiedzinski @MariahWrites @TheBingle @npiercePhDRN @Colin_Hung @GraceCordovano @gmathews71 @S4PM So very terrifyingly true ... #hcldr |
| John @joltdude RT @ShereesePubHlth: ...Just because you can use someone's data, merely by them entering your institution and signing a barely-read form, doesn't mean you should. #hcldr |
| Mariah Obiedzinski @MariahWrites RT @H_SalemOaks: @Colin_Hung I did! Every bit of dystopian media I consumed as a child ... close to real life now. #hcldr |
| Bingle @TheBingle @SunnieSouthern Government usually screws things up royally. #hcldr |
| Enlightening Results 💡 @GraceCordovano T3) Data powers our algorithms, research, & machine learning. Treat is like labor that needs to be compensated with wages. There are lives, endless hours, literally blood, sweat, & tears that go into generating health data. It can't be treated as expendable. #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc RT @drnic1: @burtrosen Is that still true if it’s sold to other companies who you don’t know or takeover that changes ownership #hcldr |
| Sunnie Southern @SunnieSouthern RT @GraceCordovano: @SunnieSouthern @dsgold I worked with #HeLa cells in grad school & read her story. It should have been required reading in grad school & for anyone in science. I treated my cell cultures with reverence after reading it #hcldr |
| Rasu Shrestha MD MBA @RasuShrestha T3: Asking permission; being more upfront; engaging the patient/consumer = these are all MUST DO's. Not "nice to do's". These need to be 'standard operating procedures'. #HCLDR |
| Duke Center for PHC @DukePHC T3 I think compensating people for sharing their genetic data may cause them to give permission for the wrong reasons. To some, $ may be the only reason for wanting to share their genetic data. Substantial compensation is nice but it may cloud people's judgments.#hcldr |
| Mariah Obiedzinski @MariahWrites @H_SalemOaks @Colin_Hung Ikr? Terrifying. #hcldr |
| Colin Hung @Colin_Hung RT @GraceCordovano: T3) Data powers our algorithms, research, & machine learning. Treat is like labor that needs to be compensated with wages. There are lives, endless hours, literally blood, sweat, & tears that go into generating health data. It can't be treated as expendable. #hcldr |
| Sally James @jamesian @npiercePhDRN For those who love the story - it was @RebeccaSkloot who wrote the book that brought story into wide open. https://t.co/qx5RliRpFR #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch RT @ShereesePubHlth: ...Just because you can use someone's data, merely by them entering your institution and signing a barely-read form, doesn't mean you should. #hcldr |
| Michael Joseph, PMP @HealthData4All @hcldr T2: Apparently not under HIPAA. Once your health information becomes either Fully De-Identified or Partially De-Identified, HIPAA no longer applies under the theory that once your personal information is removed it is believed that privacy is no longer an issue. #hcldr |
| burtrosen 🟦 @burtrosen @drnic1 the first one i'd say if they give me the opp to learn about the company, its a little on me. the change of ownership is a great question #hcldr |
| Colin Hung @Colin_Hung RT @HealthData4All: @hcldr T2: @hcldr T2: Apparently not under HIPAA. Once your health information becomes either Fully De-Identified or Partially De-Identified, HIPAA no longer applies under the theory that once your personal information is removed it is believed that privacy is no longer an issue. #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl #hcldr Why is this so important? “People’s trust in health care and health care professionals is essential for the effectiveness of health care” https://t.co/KgzCokLQFk https://t.co/t7kXTUx2Nm |
| Kimberly George @kimberlyanngeo @npiercePhDRN @Colin_Hung @MariahWrites @GraceCordovano @gmathews71 @S4PM Denials for life insurance, disability insurance, and other similar coverages are issues every single day due to diagnosis. Inevitably there will be issues with genetics too. #hcldr |
| Brian Ellerman @BrianLRMan @drnic1 @GraceCordovano @Colin_Hung @hcldr I usually have a nice whisky for #hcldr but needed to finish a strong beer I opened last night. 🍻 |
| PF Anderson @pfanderson@disabled.social @pfanderson It seems to me that being in a position to say "you can't have my data unless I get $$" is part of the privilege of those who are healthy. A kind of ableism. #hcldr |
| Mariah Obiedzinski @MariahWrites RT @DukePHC: T3 I think compensating people for sharing their genetic data may cause them to give permission for the wrong reasons. To some, $ may be the only reason for wanting to share their genetic data. Substantial compensation is nice but it may cloud people's judgments.#hcldr |
| Bingle @TheBingle @ShereesePubHlth People with ethics wouldn't. #hcldr |
| Sarah Greene @researchmatters #hcldr you might be interested in the outputs from a recent @theNAMedicine meeting on patient health data ownership at that I was fortunate to attend along with @HealthHats and other amazing experts. https://t.co/hGSIkMorNR |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 Exactly #hcldr @hu_manityco #hcldr |
| Mariah Obiedzinski @MariahWrites RT @kimberlyanngeo: @npiercePhDRN @Colin_Hung @MariahWrites @GraceCordovano @gmathews71 @S4PM Denials for life insurance, disability insurance, and other similar coverages are issues every single day due to diagnosis. Inevitably there will be issues with genetics too. #hcldr |
| Colin Hung @Colin_Hung RT @researchmatters: #hcldr you might be interested in the outputs from a recent @theNAMedicine meeting on patient health data ownership at that I was fortunate to attend along with @HealthHats and other amazing experts. https://t.co/hGSIkMorNR |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch RT @Colin_Hung: Couldn't resist throwing this GIF into the #hcldr discussion. Who knew Gattaca would become a documentary? https://t.co/AtQSQ7jR7Q |
| Mariah Obiedzinski @MariahWrites RT @SandraWoodsMtl: #hcldr Why is this so important? “People’s trust in health care and health care professionals is essential for the effectiveness of health care” https://t.co/KgzCokLQFk https://t.co/t7kXTUx2Nm |
| Colin Hung @Colin_Hung @researchmatters @theNAMedicine @HealthHats Great share. Thanks for that Sarah! #hcldr |
| Erin Moriarty Wade @EMoriartyWade T3. I absolutely think #patients should be compensated for their #data. They have suffered though difficult conditions and treatments, tough side effects, lifestyle sacrifices and massive medical bills. It’s adding insult to injury to then steal their personal health info. #hcldr |
| Enlightening Results 💡 @GraceCordovano @EMoriartyWade This makes me sick. I'm so sorry. I'm tempted to start requesting medical records in de-identified form so I can get them the same day they are generated & electronically...🧐 #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch @RasuShrestha @CarnegieMellon Definitely! Ethics lagging behind technology. #hcldr |
| Mariah Obiedzinski @MariahWrites RT @EMRAnswers: |
| Bingle @TheBingle Fascinating. #hcldr |
| John @joltdude @ShereesePubHlth Or if you use SM chats just putting one disclosure at the start of the chat... might fly past the IRB but folks may and did not see it ... That is "not" informed consent... #hcldr |
| Patient Critical Co-op @PatientCritical A3: And before anyone says 'we can't keep up with tech', here are just 2 ways being tested now, to allow anyone to assign & REVOKE data use, including in profit-sharing contracts. WE NEED THIS. #hcldr https://t.co/b0deukuuNv https://t.co/eKvaS3H856 |
| Sunnie Southern @SunnieSouthern @GraceCordovano @dsgold I completely agree! I think Heneriett Lacks Story should be required reading for anyone in healthcare. We must not repeat previous injustices. We must learn from them. #hcldr #WeMustDoBetter |
| Colin Hung @Colin_Hung RT @hcldr: T3 If a company asks each patient for permission to sell their data does it make it okay in your mind? Or does the company have to go further (ie: split the proceeds)? #hcldr https://t.co/ZIpDBSTYK4 |
 | reflexivity @stephjoke RT @GraceCordovano: @SunnieSouthern @dsgold I worked with #HeLa cells in grad school & read her story. It should have been required reading in grad school & for anyone in science. I treated my cell cultures with reverence after reading it #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @Colin_Hung @MariahWrites @GraceCordovano @gmathews71 @S4PM Personally, I think the flack is being driven by the media because fear sells. We are being manipulated into fighting for something that doesn't make sense in the big picture. It will hurt us if we 'win' #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc RT @researchmatters: #hcldr you might be interested in the outputs from a recent @theNAMedicine meeting on patient health data ownership at that I was fortunate to attend along with @HealthHats and other amazing experts. https://t.co/hGSIkMorNR |
| Virginia @PracticalHIT @Colin_Hung @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth does @RossMartin have a musical number for this topic? #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @RasuShrestha Back to trust #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @joltdude: @ShereesePubHlth Or if you use SM chats just putting one disclosure at the start of the chat... might fly past the IRB but folks may and did not see it ... That is "not" informed consent... #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @MariahWrites: @GraceCordovano @gmathews71 @S4PM If it's explained properly, I bet many people would donate their #genetic data for the greater good. I would - if given a CHOICE. #hcldr |
| Wes Wilson @WesleyWilson @gmathews71 for sure... shoot me a DM later this week! I am just a little swamped until friday here =) #hcldr |
| The Roctor,MD @TheRoctor_MD @ColtonOrtolf Data is what has made Big Tech billionaires. They didn't ask or tell anyone before doing it either. To me, that is a problem. #hcldr |
| Colin Hung @Colin_Hung RT @SunnieSouthern: @GraceCordovano @dsgold I completely agree! I think Heneriett Lacks Story should be required reading for anyone in healthcare. We must not repeat previous injustices. We must learn from them. #hcldr #WeMustDoBetter |
| Colin Hung @Colin_Hung RT @PatientCritical: A3: A3: And before anyone says 'we can't keep up with tech', here are just 2 ways being tested now, to allow anyone to assign & REVOKE data use, including in profit-sharing contracts. WE NEED THIS. #hcldr https://t.co/b0deukuuNv https://t.co/eKvaS3H856 |
| Enlightening Results 💡 @GraceCordovano @EMRAnswers @RasuShrestha @CarnegieMellon I believe patients should have their own privacy policy that they bring to healthcare organizations & the ecosystem. Working on a piece...stay tuned. #hcldr |
| JETS! ✈️ A Miniature Schnauzer in ABQ, New Mexico! @JetsSchnauzer Me too. Gotta walk @wareFLO! Don't forget to scratch your dog, cat, bird, gecko or poisonous albino #petcobra behind the ears tonight! (Well, behind the jaw, since the little bones that used to be the snake's ears evolved into small jawbones allowing swallowing prey whole) #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch @hcldr T3 Question of who owns the data to answer this question. The patient owns the data and the company is the custodian? Or does ownership ever transfer to company? #hcldr |
| Cred Collab Group @credcollab T3: Yes if we are contacted on the sale of our data, then they should pay up! Splitting the fees is whats fair in my opinion. Our data is everywhere, such an interesting topic. #hcldr https://t.co/zMrIuwIfmW |
| Mariah Obiedzinski @MariahWrites RT @pfanderson: @Colin_Hung @MariahWrites @GraceCordovano @gmathews71 @S4PM Personally, I think the flack is being driven by the media because fear sells. We are being manipulated into fighting for something that doesn't make sense in the big picture. It will hurt us if we 'win' #hcldr |
| Erin Moriarty Wade @EMoriartyWade @GraceCordovano It’s all good now :) It’s just my favorite anecdote to throw out during #hcldr chat lol |
| Kate Warnock @mkatewarnock Thx for the share @ShimCode. Must read piece. #hcldr #pinksocks |
| Rasu Shrestha MD MBA @RasuShrestha RT @LGin412: T3: T3: In lite of the @23andMe @GSK news, I remain hopeful that collective energy can be directed towards the role of #blockchain in the quest for #ethical, #compliant, and mutually beneficial #data exchange for good. I think companies like @instartoken are onto something! #hcldr |
| Mariah Obiedzinski @MariahWrites @GraceCordovano @EMRAnswers @RasuShrestha @CarnegieMellon Do share when ready! Super interesting. #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @WesleyWilson Also lack of adequate protection of data; once it's downloaded or can be passed on (shared) without the patient consent that's supposed to be built in (privacy by design). Should be read-only or protected from sharing. System design failure... #hcldr |
| Colin Hung @Colin_Hung @70mq Thanks for being here Josephine. Appreciate the time you could give us here tonight! #hcldr |
| Anthony Leon @anthonynotleon @HealthData4All @hcldr Is there a clause or is it back in effect when re-identified? #hcldr |
| Bingle @TheBingle RT @GraceCordovano: @EMRAnswers @RasuShrestha @CarnegieMellon I believe patients should have their own privacy policy that they bring to healthcare organizations & the ecosystem. Working on a piece...stay tuned. #hcldr |
| HCLDR Moderator @hcldr Almost time for our final question. Let’s get ready for T4 in just 1 minute! #hcldr |
| John @joltdude RT @LGin412: T3: T3: In lite of the @23andMe @GSK news, I remain hopeful that collective energy can be directed towards the role of #blockchain in the quest for #ethical, #compliant, and mutually beneficial #data exchange for good. I think companies like @instartoken are onto something! #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @GraceCordovano @Colin_Hung @anthonynotleon @hcldr That would be interesting. 23andme did a really good job of consenting, and has made sure that there is value in the product for both sides. I suspect very few wd opt out just because of the headlines. #hcldr |
| dighealthdoc @gmathews71 @researchmatters @theNAMedicine @HealthHats Thanks for this @researchmatters !- I had just read some of the findings - found it enlightening - though a bit depressing given how it seemed to end - no recourse for personal data ownership #my31 #hcldr |
| Colin Hung @Colin_Hung @HealthITdog @wareFLO Take it easy on @wareFLO I think he has been having issues with his food lately. Might want to go a little slower tonight ;) Have a great night! #hcldr |
| Sally James @jamesian @TheBingle It was her first book, took more than a decade to report/write/publish. #hcldr |
| Janet Kennedy @GetSocialHealth RT @Colin_Hung: Couldn't resist throwing this GIF into the #hcldr discussion. Who knew Gattaca would become a documentary? https://t.co/AtQSQ7jR7Q |
| Kimberly George @kimberlyanngeo RT @nickisnpdx: T3 hat tip @sam_debrouwer & @walterdebrouwer https://t.co/yyG7Y9PaAP (definitely watch the video) for giving everyone the opportunity to have a seat at the table to sell their own data. #hcldr https://t.co/Eb80rvJxcP |
| HCLDR Moderator @hcldr T4 Which company or organization would you be most upset with if they sold your data without telling you? #hcldr https://t.co/NOWUAM4q6C |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl RT @RasuShrestha: We seriously need to have more conversations about ethics and moral compass; in this day and age of #digitalhealth. CMU had an amazing first of its kind conference earlier this year. #HCLDR #Pittsburgh @CarnegieMellon Checkout: #CMUAIEthics |
| Kez! @denniskenez T4 Any of the PBM's. Absolute bottom of the healthcare genetic pool. #BottomFeeders #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @GraceCordovano @Colin_Hung @anthonynotleon @hcldr It's almost fun to watch all the folk freaking out over the headlines, especially since when I read the reporting it is so clearly outrageously biased and ill researched. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @GraceCordovano @EMRAnswers @RasuShrestha @CarnegieMellon They can! Many patients don't realize, those papers you sign during registration are a contract. You can have you own "contract" as well, or have the org's altered to fit you needs. You don't have to fall for the "sign it or leave" trap. True empowerment, my friend #hcldr |
| Enlightening Results 💡 @GraceCordovano @npiercePhDRN @Colin_Hung @MariahWrites @gmathews71 @S4PM That is only scratching the surface. Genetic data means hereditary data, family data. Relatives. We are talking the holy grail of people's lives could be ruined across multiple people/families. Should entire families consent? #hcldr |
| Sarah Greene @researchmatters Ooh, that is a cool idea. Data privacy is a dynamic state for me, rather than a fixed trait. Purpose, funder, end-users, all factor in for me when I decide to share or not share. #hcldr |
| John @joltdude After the #DSMA debacle which still hasnt been addressed .. just dismissed as "CYA" folks should be watching tonights #HCLDR chat about #ethics #consent and selling pt data #diabetes |
| Enlightening Results 💡 @GraceCordovano RT @ShereesePubHlth: ...Just because you can use someone's data, merely by them entering your institution and signing a barely-read form, doesn't mean you should. #hcldr |
| Colin Hung @Colin_Hung @pfanderson @GraceCordovano @anthonynotleon @hcldr Agree. It's why I think they will weather the storm - hopefully a little wiser for the next time. They are a pretty good company #hcldr |
| Colin Hung @Colin_Hung RT @researchmatters: Ooh, that is a cool idea. Data privacy is a dynamic state for me, rather than a fixed trait. Purpose, funder, end-users, all factor in for me when I decide to share or not share. #hcldr |
| Bingle @TheBingle @Jim_TheRocktor @ColtonOrtolf Even some or one Big Tech Billionaires need a booster seat! #hcldr |
| Colin Hung @Colin_Hung RT @hcldr: T4 Which company or organization would you be most upset with if they sold your data without telling you? #hcldr https://t.co/NOWUAM4q6C |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 RT @anthonynotleon: @HealthData4All @hcldr Is there a clause or is it back in effect when re-identified? #hcldr |
| ChronicallyJess @ChronicallyJess @pfanderson @hcldr I get what you’re saying, but as a pt who volunteered to support a drug that went on to gross billions of dollars in revenue for pharma, I realize that I’m being played as my new ins co now wants to deny my access. We’ve got to figure out some sort of rights to this stuff. #hcldr |
| Janet Kennedy @GetSocialHealth RT @MariahWrites: T2: T2: I'm baffled by this. In #healthcare #contentmarketing, we can't even market in certain capacities to patients by condition. How is SELLING their genetic data ethical or legal? #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 T4 Any company that sells *my* data making profit off my back without my permission and/or recompense #hcldr woudl make me as angry as my Doppelgänger @GordonRamsay can be in #HellsKitchen https://t.co/xlIhq7XYyj |
| Sunnie Southern @SunnieSouthern @PracticalHIT I understand health literacy plays a role and I think that each of us must take responsibliity for what we sign and help others to do the same. People like @healthythinker @MightyCasey @chrissyfarr @SusannahFox do a great job of raising red flags for us all. #hcldr |
 | Chuck Webster MD, MS AI, MS Systems Engineering @wareFLO JETS! The @HealthITdog is wise beyond her years, all two and a half of them! #hcldr |
| Sally James @jamesian T4 - I'd be most upset if @NIH or other org funded by taxpayers was selling my data. #hcldr |
| Colin Hung @Colin_Hung @drnic1 @GordonRamsay It's like I'm seeing double! #hcldr |
| Mariah Obiedzinski @MariahWrites RT @hcldr: T4 Which company or organization would you be most upset with if they sold your data without telling you? #hcldr https://t.co/NOWUAM4q6C |
 | Varadharajan K @VaradhKrish Agree #hcldr |
| Colin Hung @Colin_Hung RT @RasuShrestha: We seriously need to have more conversations about ethics and moral compass; in this day and age of #digitalhealth. CMU had an amazing first of its kind conference earlier this year. #HCLDR #Pittsburgh @CarnegieMellon Checkout: #CMUAIEthics |
| Larry Gioia 🔠 @LGin412 @dsgold Make sure you share your public key before you gooooooooooo <fades> #hcldr |
| Ken Taylor, RPIC @KenRayTaylor T4 I would be most upset with the Dr or Co. that requested me to get it. I would lose trust in them if I ever found out. I would feel like they are just trying to create another revenue stream. #hcldr |
| Patient Critical Co-op @PatientCritical Alas, most systems we think of as 'broken' are in fact working exactly as they were designed to: Businesses don't *want* to have more restrictions on how they can use and profit from any resource at their disposal. It's up to us to create those...and enforce them. #hcldr |
| Barby Ingle Official @BarbyIngle T4: My direct medial provider would upset me the most. That would be double dipping on my health more so than a third party who is not directly responsible for my care. #hcldr |
| Mariah Obiedzinski @MariahWrites T4: MY DOCTOR! #hcldr |
| Sue Woods MD MPH 💙 @SueWoods @hcldr T3 It would be interesting to apply behavioral economics and give people choices - donate data for charity, science, co-pays, etc! #hcldr |
 | ZibdyHealth @ZibdyHealth @hcldr Both are fine as long as company makes it clear. #hcldr #HITsm https://t.co/fqPlONPvdp |
| ElizabethKelly, Ph.D @Elizabe85727641 T4 Health care provider organizations, hospitals, & medical device companies. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @ColtonOrtolf @DukePHC Bravo! Well said! I really think the idea of asking to pay patients for data sets up the same sort of situation that led to illegal organ trafficking https://t.co/y8hMxh9cW2 #hcldr |
 | Tami Dew Rich, MBA @bostonheartmom T2 Coming #hcldr late @npiercePhDRN I totally agree. As 3rdGeneration #FraminghamHeartStudy I’m proud my kin’s data contributed to♥️Research since 1948 but disappointed to NOT get my data, no health coaching, etc FINALLY 6/17 was given🍎⌚️@NokiaHealth wireless BPcuff for rpm |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 RT @SunnieSouthern: @PracticalHIT I understand health literacy plays a role and I think that each of us must take responsibliity for what we sign and help others to do the same. People like @healthythinker @MightyCasey @chrissyfarr @SusannahFox do a great job of raising red flags for us all. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @GraceCordovano @EMRAnswers @RasuShrestha @CarnegieMellon One of my favorite situations I talk about is my refusal to use waiting rooms. I took a stand once and it has become my contract. I don't wait. #PatientsHavePower #hcldr https://t.co/DEC2Tdh2t9 |
| Matthew Katz, MD 🟦 @subatomicdoc @endocrine_witch @RasuShrestha @CarnegieMellon To paraphrase General Omar Bradley: "The world has achieved brilliance without conscience. Ours is a world of [technical] giants and ethical infants." #hcldr |
| Colin Hung @Colin_Hung T4 I'd be totally upset if my doc shared data that could be tied back directly to me solely for the purposes of profiting. To help me in my care - I'm 100% behind. That's who I'd be most upset with #hcldr |
| Duke Center for PHC @DukePHC T4 I don't think I would focus on which organization, but more so on the fact that they willingly sold the data. It could be the most successful company but if they decided to sell personal data without permission; it does not matter who it was: they broke our trust.#hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba RT @EMRAnswers: |
| fredtrotter @fredtrotter RT @SunnieSouthern: T3 I think companies should have to ask and we should have the right to determine what, who, when, for how long, & at what price/ value exchange we are willing to share data. I don't think government or governing bodies should set prices or stop people from giving. #hcldr |
| Enlightening Results 💡 @GraceCordovano @gmathews71 @pfanderson @Colin_Hung @anthonynotleon @hcldr Take any prescription medication & pull out the insert. It clearly states every single possible side effect you may experience. That's the minimal level of transparency that needs to come with DTC tests. #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc RT @hcldr: T4 Which company or organization would you be most upset with if they sold your data without telling you? #hcldr https://t.co/NOWUAM4q6C |
| Patient Critical Co-op @PatientCritical A4: Example of systems looking broken but working as intended: @NHSEngland decided they didn't explicitly need consent to share #patientdata, but acknowledged patients can opt-out of any info-sharing agreements by contacting NHS's data protection officer. (1/2) #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @npiercePhDRN YES! Bless you! Thank goodness, people on this chat are starting to talk about what could go wrong with paying people for their data. #hcldr |
 | Steve Sisko @ShimCode @drnic1 @GordonRamsay Too bad that guy Gordon isn't an action hero. You could be a stunt double! Do you know how to use a toaster and a knife Nick? #hcldr |
| ElizabethKelly, Ph.D @Elizabe85727641 T4 Also drug companies. #hcldr |
| Michael Joseph, PMP @HealthData4All @anthonynotleon @hcldr Not a lawyer, so not sure. IMHO, if selling de-identified data for research to advance medical breakthroughs AND provides financial sustainability along the way, is it all that bad? Is this not for the "common good?" #hcldr |
| fredtrotter @fredtrotter RT @GraceCordovano: @SunnieSouthern @dsgold I worked with #HeLa cells in grad school & read her story. It should have been required reading in grad school & for anyone in science. I treated my cell cultures with reverence after reading it #hcldr |
| The Roctor,MD @TheRoctor_MD @DukePHC @MariahWrites Kinda like paying for sperm n blood. #hcldr |
| Sarah Greene @researchmatters @ChronicallyJess @pfanderson @hcldr Damn. #hcldr |
| Brent Reed @brentnreed T4 I feel like it can be somewhat justified by companies with whom I choose to do business, but not those where I have little or no choice (e.g., utility companies, health care organizations). #hcldr |
| Mariah Obiedzinski @MariahWrites RT @GraceCordovano: @npiercePhDRN @Colin_Hung @MariahWrites @gmathews71 @S4PM That is only scratching the surface. Genetic data means hereditary data, family data. Relatives. We are talking the holy grail of people's lives could be ruined across multiple people/families. Should entire families consent? #hcldr |
| Cred Collab Group @credcollab T4: 100% my Doctor. They wouldn't want me selling their information without them knowing would they? #providerdata #credentialing #hcldr |
| ChronicallyJess @ChronicallyJess T4: companies are already using our data and profiting from it. insurance companies are already manipulating our data to nudge us in ways that most benefit them, with plans already in the works to drive this further. It’s already happening and we should already be upset #hcldr |
 | Amanda G @LAlupusLady T4 Jumping in to #hcldr late but i would be upset if my Drs. sold my data without telling me. But the list goes on... give me my (damn) data before you sell it to anyone. |
| fredtrotter @fredtrotter RT @SunnieSouthern: @dsgold T2: @dsgold T2: Also, how many are familiar w/ Henrietta Lacks? If you don't know her & her story, please explore. I don't urge people often, but I feel compelled to in this case. For all that we did to her and her family, we can at least remember her. https://t.co/XQR1suyxVr #HCLDR |
| Patient Critical Co-op @PatientCritical A4: (2/2) This, of course, assumes patients in @NHSEngland KNEW the data-sharing agreement existed in the first place, and how to contact and navigate their opt-out. Which many of course, cannot. #hcldr "https://t.co/acbWFe3CDg |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @npiercePhDRN @MariahWrites @Colin_Hung @GraceCordovano @gmathews71 @S4PM #hcldr Have been reading "Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present" Imagine that with genetic data... so much discrimination already/still in healthcare https://t.co/6RpZwpXuCb https://t.co/eRqqNNnUVD |
| Colin Hung @Colin_Hung RT @bostonheartmom: T2 Coming #hcldr late @npiercePhDRN I totally agree. As 3rdGeneration #FraminghamHeartStudy I’m proud my kin’s data contributed to♥️Research since 1948 but disappointed to NOT get my data, no health coaching, etc FINALLY 6/17 was given🍎⌚️@NokiaHealth wireless BPcuff for rpm |
| Bingle @TheBingle @SunnieSouthern @GraceCordovano @dsgold That was a complete travesty. The Tuskegee Experiment was another. Time proves the NYU Professor story is at the very least a Big Coincidence. @JudgeJudy has said she doesn't believe in coincidence. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @Colin_Hung How doctors, who swear to act in good faith, become so disassociated & disengaged that they begin to rationalize selling for profit is beyond me. #hcldr |
| Michael Joseph, PMP @HealthData4All RT @MariahWrites: @GraceCordovano @gmathews71 @S4PM If it's explained properly, I bet many people would donate their #genetic data for the greater good. I would - if given a CHOICE. #hcldr |
| Mariah Obiedzinski @MariahWrites @Jim_TheRocktor @DukePHC Right! Organs ... entire humans ... #hcldr |
| Amanda G @LAlupusLady @Colin_Hung great minds think alike.... #hcldr |
| Colin Hung @Colin_Hung @bostonheartmom @npiercePhDRN @NokiaHealth Hello Tami. Thanks for joining #hcldr |
| Kate Warnock @mkatewarnock T4 Not a response but a question: is this a generational concern? Do my teenaged kids even think about data privacy when using apps? Not so much...so will they care about how their health data is used when they intersect w/ the health system? Not so sure...#hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @PracticalHIT @Colin_Hung @MariahWrites @GraceCordovano @gmathews71 @S4PM A big part of the fear is people don't realize that the 23andMe data is actually not terribly useful or actionable for most things at the individual level. It only has power in the aggregate, in large datasets. Why stop now? #hcldr |
| Varadharajan K @VaradhKrish I don't read this as too negative...but cautious (not even too cautious). We need this narrative #hcldr |
| Colin Hung @Colin_Hung RT @SandraWoodsMtl: @npiercePhDRN @MariahWrites @Colin_Hung @GraceCordovano @gmathews71 @S4PM #hcldr Have been reading "Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present" Imagine that with genetic data... so much discrimination already/still in healthcare https://t.co/6RpZwpXuCb https://t.co/eRqqNNnUVD |
| Mariah Obiedzinski @MariahWrites RT @SandraWoodsMtl: @npiercePhDRN @MariahWrites @Colin_Hung @GraceCordovano @gmathews71 @S4PM #hcldr Have been reading "Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present" Imagine that with genetic data... so much discrimination already/still in healthcare https://t.co/6RpZwpXuCb https://t.co/eRqqNNnUVD |
| Varadharajan K @VaradhKrish RT @ShereesePubHlth: @ChronicallyJess @gmathews71 @hcldr Historically it has been reactive. It's seems to be the only way we know how to regulate. #hcldr |
 | NoSQL @NoSQLDigest RT @PatientCritical: A2: A2: De-identified sounds good, but it's just the new 'redacted'. It only *sounds* good. Blurred photos can be un-blurred, de-ID'd can be easily re-ID'd. Again, #bigdata gets ahead of #regulations & co's benefit, #patientdata gets co-opted. #hcldr https://t.co/K31toYf4xg |
| Rasu Shrestha MD MBA @RasuShrestha I really enjoyed wathcing this video by @RichieEtwaru. Definitely worth a listen. I'm excited about the role of #blockchain to address this issue, head on! https://t.co/8mjR4pwTCr #HCLDR cc: @LGin412 @hu_manityco #My31 #DataPropertyDay |
| Mariah Obiedzinski @MariahWrites RT @pfanderson: @PracticalHIT @Colin_Hung @MariahWrites @GraceCordovano @gmathews71 @S4PM A big part of the fear is people don't realize that the 23andMe data is actually not terribly useful or actionable for most things at the individual level. It only has power in the aggregate, in large datasets. Why stop now? #hcldr |
| Varadharajan K @VaradhKrish RT @endocrine_witch: @hcldr T1 Are there enough safeguards? Sets precedent? #hcldr |
| Bingle @TheBingle @ChronicallyJess T4 Time. #hcldr |
| John @joltdude RT @PatientCritical: A4: A4: (2/2) This, of course, assumes patients in @NHSEngland KNEW the data-sharing agreement existed in the first place, and how to contact and navigate their opt-out. Which many of course, cannot. #hcldr "https://t.co/acbWFe3CDg |
| Sarah Greene @researchmatters OMG. We need a book club on this, or at least an #hcldr chat. Thanks for sharing, Sandra! |
| Cred Collab Group @credcollab @ColtonOrtolf Oh I am sure they are already doing it. #hcldr |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: T4: T4: My direct medial provider would upset me the most. That would be double dipping on my health more so than a third party who is not directly responsible for my care. #hcldr |
| Barby Ingle Official @BarbyIngle RT @KenRayTaylor: T4 I would be most upset with the Dr or Co. that requested me to get it. I would lose trust in them if I ever found out. I would feel like they are just trying to create another revenue stream. #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @HealthData4All @anthonynotleon @hcldr Were the de-identification possible #hcldr |
| iPain Foundation Research Projects @iPain_Research RT @KenRayTaylor: T4 I would be most upset with the Dr or Co. that requested me to get it. I would lose trust in them if I ever found out. I would feel like they are just trying to create another revenue stream. #hcldr |
| Patient Critical Co-op @PatientCritical A4: OR: "give indivs the chance to forbid collection of their info for commercial use...“individuals own their data,” says Pfizer's Berger. “If somebody is using (it) they should know.” A nice sentiment TOS & EULA's routinely neuter effectively. #hcldr https://t.co/Pp3Cji9VMc |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch RT @subatomicdoc: @endocrine_witch @RasuShrestha @CarnegieMellon To paraphrase General Omar Bradley: @endocrine_witch @RasuShrestha @CarnegieMellon To paraphrase General Omar Bradley: "The world has achieved brilliance without conscience. Ours is a world of [technical] giants and ethical infants." #hcldr |
| Virginia @PracticalHIT #hcldr #t4 my doctor |
| John @joltdude RT @SunnieSouthern: @dsgold T2: @dsgold T2: Also, how many are familiar w/ Henrietta Lacks? If you don't know her & her story, please explore. I don't urge people often, but I feel compelled to in this case. For all that we did to her and her family, we can at least remember her. https://t.co/XQR1suyxVr #HCLDR |
| International Pain Foundation® @iPainOfficial RT @KenRayTaylor: T4 I would be most upset with the Dr or Co. that requested me to get it. I would lose trust in them if I ever found out. I would feel like they are just trying to create another revenue stream. #hcldr |
| Varadharajan K @VaradhKrish RT @TheBingle: @hcldr T1 No. Nothing is "de-identified" IMHO. And it's just a matter of price. #hcldr |
| Rasu Shrestha MD MBA @RasuShrestha RT @subatomicdoc: @endocrine_witch @RasuShrestha @CarnegieMellon To paraphrase General Omar Bradley: @endocrine_witch @RasuShrestha @CarnegieMellon To paraphrase General Omar Bradley: "The world has achieved brilliance without conscience. Ours is a world of [technical] giants and ethical infants." #hcldr |
| Enlightening Results 💡 @GraceCordovano T4) This isn't company specific but rather due to rampant de-identification of data practices that all not publicized to the general public. This needs to be taught in schools. #HealthcareExpLiteracy #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @Colin_Hung @GraceCordovano @anthonynotleon @hcldr I have been very impressed with @23andMe for a long time. I find the people who find them scary usually have not even peeked under the hood. Once I show they the insides, the consent, the perms, the data, they grudgingly agree it's not so bad ;) #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @EMRAnswers @GraceCordovano @RasuShrestha @CarnegieMellon The 1st time I did it, the doctor was a friend; the receptionist was irritated . but the point was made. After that, with the pediatrician & every dr., I discuss it up front. No wait; no worry #hcldr |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: T4: T4: My direct medial provider would upset me the most. That would be double dipping on my health more so than a third party who is not directly responsible for my care. #hcldr |
| Angela Hemans is on Threads, LinkedIn, TikTok @AngelaHemans @ShereesePubHlth @GraceCordovano @EMRAnswers @RasuShrestha @CarnegieMellon #hcldr https://t.co/v5VtKip5i9 |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: T4: T4: My direct medial provider would upset me the most. That would be double dipping on my health more so than a third party who is not directly responsible for my care. #hcldr |
| Colin Hung @Colin_Hung T4 In all honesty the company I'd be most disappointed if they sold identifiable data on me would be Amazon. I really don't want people to know how many chocolate and comic books I buy online :) #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA RT @H_SalemOaks: @AlzheimersLA It'll be interesting to see. I think younger generations will simultaneously be more careful and also more accepting. For example, I've accepted that Facebook listens to everything I do, but if I need to communicate something that needs to stay a secret I use signal #hcldr |
| Erin Moriarty Wade @EMoriartyWade I’m so sorry. This is absolutely horrible! #hcldr |
| Janet Kennedy @GetSocialHealth RT @researchmatters: OMG. We need a book club on this, or at least an #hcldr chat. Thanks for sharing, Sandra! |
| John @joltdude RT @RasuShrestha: We seriously need to have more conversations about ethics and moral compass; in this day and age of #digitalhealth. CMU had an amazing first of its kind conference earlier this year. #HCLDR #Pittsburgh @CarnegieMellon Checkout: #CMUAIEthics |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @mkatewarnock You can’t put a wise head on young shoulders #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @GraceCordovano: @EMRAnswers @RasuShrestha @CarnegieMellon I believe patients should have their own privacy policy that they bring to healthcare organizations & the ecosystem. Working on a piece...stay tuned. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @ChronicallyJess @hcldr That's an excellent example of what can go wrong. That's the problem with insurance, however. That is going to take some big time legislative fixes, I suspect #hcldr |
| Patient Critical Co-op @PatientCritical A4: most people don't read EULA's: Apple forbade you from using iTunes to create nuclear weapons. Google claimed perpetual license to publish & display passwords & everything you did online. SOCIETY NEEDS A USER-CENTRIC, *&* REVOKABLE DATA FRAMEWORK https://t.co/SW0BRA7VFB #hcldr |
| Sue Woods MD MPH 💙 @SueWoods @hcldr T4: All of Them #Hcldr https://t.co/Q8iHJP6YIO |
| Rasu Shrestha MD MBA @RasuShrestha T4: ALL of them! #hcldr |
| Anthony Leon @anthonynotleon @HealthData4All @hcldr I get the entire premise and why it is helpful, I'd love for people to do more with data (I'm in interop). I think it goes into trust as someone said earlier. What are they going to do with my info? Can this hurt me later? Are these protections void if company sells? #HCLDR |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @ChronicallyJess: @pfanderson @hcldr I get what you’re saying, but as a pt who volunteered to support a drug that went on to gross billions of dollars in revenue for pharma, I realize that I’m being played as my new ins co now wants to deny my access. We’ve got to figure out some sort of rights to this stuff. #hcldr |
| Colin Hung @Colin_Hung @pfanderson @GraceCordovano @anthonynotleon @hcldr @23andMe Agree. I think they are a good company too, which makes it all the more odd they didn't try to do more ahead of this announcement. Still, it may not have been up to them . #hcldr |
| Barby Ingle Official @BarbyIngle RT @KenRayTaylor: T3 I think the patient should have 1st right to make money from there own data. Splitting proceeds would be ok with me if i didn't have to do any of the work to sell it. #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch @subatomicdoc @RasuShrestha @CarnegieMellon I think it's been debated whether Einstein really said this - “It’s become appallingly clear that our technology has surpassed our humanity.” #hcldr |
| Colin Hung @Colin_Hung RT @anthonynotleon: @HealthData4All @hcldr I get the entire premise and why it is helpful, I'd love for people to do more with data (I'm in interop). I think it goes into trust as someone said earlier. What are they going to do with my info? Can this hurt me later? Are these protections void if company sells? #HCLDR |
| ChronicallyJess @ChronicallyJess @health_wizz @hcldr I agree that pt data sharing concerns are not company specific. There is currently no transparency OR clear guidelines for what defines appropriate “consent”. Which means ethical and moral concerns abound in what could turn into a serious issue for many down the road. #hcldr |
| HCLDR Moderator @hcldr Repeating T4 Which company or organization would you be most upset with if they sold your data without telling you? #hcldr https://t.co/aFcgSI4TTR |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @GraceCordovano: @gmathews71 @pfanderson @Colin_Hung @anthonynotleon @hcldr Take any prescription medication & pull out the insert. It clearly states every single possible side effect you may experience. That's the minimal level of transparency that needs to come with DTC tests. #hcldr |
| Enlightening Results 💡 @GraceCordovano @mkatewarnock Data de-identification, privacy, transparency should be taught in schools. #hcldr |
| Colin Hung @Colin_Hung RT @ChronicallyJess: @pfanderson @hcldr I get what you’re saying, but as a pt who volunteered to support a drug that went on to gross billions of dollars in revenue for pharma, I realize that I’m being played as my new ins co now wants to deny my access. We’ve got to figure out some sort of rights to this stuff. #hcldr |
| Patient Critical Co-op @PatientCritical A4: "(API's) hide the inner working...this creates separate silos of information...(people) often find it hard to share their own data w/ people...in the enterprise...systems that could enable individuals to share information remain closed off." https://t.co/HWJyKWHnaJ #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @ShimCode @GordonRamsay In a heartbeat #Hcldr |
| Mariah Obiedzinski @MariahWrites RT @Colin_Hung: T4 In all honesty the company I'd be most disappointed if they sold identifiable data on me would be Amazon. I really don't want people to know how many chocolate and comic books I buy online :) #hcldr |
| Janet Kennedy @GetSocialHealth "It's just a number" and not a person. #HCLDR |
| Brent Reed @brentnreed T4 Well, last week an article in @HBR indicated that @Dropbox had shared information about a lot of its users without their consent, so there’s that. https://t.co/UyPj4ihLOj #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA @H_SalemOaks There are so many platforms, each with its own uses and language. Part of tech & media fluency is knowing which to use for what and when. #hcldr |
| Colin Hung @Colin_Hung RT @hcldr: Repeating T4 Which company or organization would you be most upset with if they sold your data without telling you? #hcldr https://t.co/aFcgSI4TTR |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @AngelaHemans @GraceCordovano @EMRAnswers @RasuShrestha @CarnegieMellon Social experiment. When you get to the Dr's office, don't go into the wait room. tell them, my appt time is___; I'm here; let's go. Honestly if they think you're a little nuts, they never make you wait. Going into the wait room is their little unspoken agreement to wait. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @gmathews71 @GraceCordovano @Colin_Hung @anthonynotleon @hcldr Maybe. Understanding of consent varies wildly from person to person. But I know, as a @23andMe customer, that they made the intent to sell the data very clear in the consent process. #hcldr |
| Steve Sisko @ShimCode @hcldr The Vatican. But lately I don't trust anyone - not even their CEO the @Pontifex #hcldr |
| Colin Hung @Colin_Hung RT @brentnreed: T4 Well, last week an article in @HBR indicated that @Dropbox had shared information about a lot of its users without their consent, so there’s that. https://t.co/UyPj4ihLOj #hcldr |
| Mariah Obiedzinski @MariahWrites @Colin_Hung Or #HEAVYMETAL apparel ... #hcldr #GUILTY |
| Patient Critical Co-op @PatientCritical A4: @VeraJourova, Commissioner for @EU_Justice & @EU_Consumer #hcldr cited an @ICOnews report showing scale of #data abuse & how social media & other #dataminers use micro targeting w/o transparency, responsibility. We need a #consumerdata & #healthdata-centric framework #hcldr |
 | RoughAcres @RoughAcres RT @researchmatters: @hcldr Seems like if Hollywood can figure out how to send royalty checks to Jennifer Aniston every time an episode of "Friends" airs on cable, someone should be able to figure out data royalties for patient contributors. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA RT @GetSocialHealth: "It's just a number" and not a person. #HCLDR |
| ChronicallyJess @ChronicallyJess @pfanderson @hcldr I totally agree that it is a legislative nightmare with insurance companies in the US... so let’s learn from it and change for how we classify, protect, and use patient data. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @Colin_Hung: @pfanderson @GraceCordovano @anthonynotleon @hcldr @23andMe Agree. I think they are a good company too, which makes it all the more odd they didn't try to do more ahead of this announcement. Still, it may not have been up to them . #hcldr |
| Brian Ellerman @BrianLRMan @RasuShrestha Get your own answer! 😉 Yes, agree completely. #hcldr |
| Mariah Obiedzinski @MariahWrites @BrianLRMan @hcldr Love. #hcldr |
| Patient Critical Co-op @PatientCritical Folks, if I sound like a broken record, it's to prove #patientdata is tokenism, and the excuses we get for why it stays this way? Broken record. #hcldr |
| Sally James @jamesian @GraceCordovano @mkatewarnock Just wish #healthliteracy in general, including data, was taught anywhere. #hcldr |
| Colin Hung @Colin_Hung RT @EMRAnswers: T4: |
| Matthew Katz, MD 🟦 @subatomicdoc RT @brentnreed: T4 Well, last week an article in @HBR indicated that @Dropbox had shared information about a lot of its users without their consent, so there’s that. https://t.co/UyPj4ihLOj #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 Wow....just wow #hcldr |
 | Jennifer Michelle, MPH (she) @MMSJennifer Hi all! Just getting in and looking forward to going through the tweets. Glad to catch even a few minutes! #hcldr |
| Mariah Obiedzinski @MariahWrites RT @ChronicallyJess: @pfanderson @hcldr I totally agree that it is a legislative nightmare with insurance companies in the US... so let’s learn from it and change for how we classify, protect, and use patient data. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA A system of accountability and protections for patients. 🎯 #hcldr |
| Enlightening Results 💡 @GraceCordovano @pfanderson I'd love to share my thoughts with you on this: https://t.co/74SCGXQgDf #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA RT @EMRAnswers: T4: |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @2healthguru Not even a little. Are you? I don't know if it's your intention to be insulting but that's uncalled for. #hcldr https://t.co/P5ZeATZmQ0 |
| PF Anderson @pfanderson@disabled.social @pfanderson @Colin_Hung @GraceCordovano @anthonynotleon @hcldr @23andMe That's a good point. Still, my feeling is that the announcement is being "spun" for maximum clicks & sales. I see this as a responsible partnership, & suspect 23andme was super careful about choosing a pharma partner. I'm impressed with their choice #hcldr |
| Patient Critical Co-op @PatientCritical A4: Many issues in #bigdata are not due to lack of techn(BUT) a byproduct of biz models & #regulation & patients are mostly out of the loop...Is it really a good idea to let Google, Facebook etc take control of #healthdata? Remember #cambridgeanalytica? #HCLDR |
| Cred Collab Group @credcollab @GetSocialHealth There are still some good ones out there. The corporate type places are the ones we have issues with. #hcldr |
| Bingle @TheBingle @HealthData4All @anthonynotleon @hcldr Well #1 Fact you are not lawyer increases odds you're ethical&honest IMHO. When top pro gives patient data to HC professional who then colludes together with others & then Breaking News Happens. The patient had more info. NO; not for "common good" #hcldr |
 | Ross Martin @rossmartin@toad.social @RossMartin @Colin_Hung @kymlmartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth @Colin_Hung We feel bad about not having pithy comments for the #hcldr session tonight. Okay, I’m trying to figure out how to make that sound more sincere without actually lying. Thanks for being such an amazing host today! @kymlmartin @BoyleBJ @coryfoscoPCC https://t.co/jXF8sd6M1X |
| Sarah Greene @researchmatters Everyone...pretend I'm retweeting this 654,227 times. Thanks! #hcldr #healthliteracy #dataliteracy #scientificliteracy |
| Michael Joseph, PMP @HealthData4All @drnic1 @anthonynotleon @hcldr Agreed, Nick. There are gaps and security issues that introduce risks of exposing PII. Companies that do this must mitigate these risks or deal with consequences of a data breach: bad press, fines, lost revenue, resignations, etc. #hcldr |
| ChronicallyJess @ChronicallyJess @health_wizz @hcldr I sure hope so! #hcldr |
| Kate Warnock @mkatewarnock T4 If kids are being taught #blockchain and #cryptocurrencies, why not? Perfect fit. #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 RT @PatientCritical: A4: A4: @VeraJourova, Commissioner for @EU_Justice & @EU_Consumer #hcldr cited an @ICOnews report showing scale of #data abuse & how social media & other #dataminers use micro targeting w/o transparency, responsibility. We need a #consumerdata & #healthdata-centric framework #hcldr |
 | Lynne (Watanabe) MacFarlane @lynnewatanabe RT @RasuShrestha: We seriously need to have more conversations about ethics and moral compass; in this day and age of #digitalhealth. CMU had an amazing first of its kind conference earlier this year. #HCLDR #Pittsburgh @CarnegieMellon Checkout: #CMUAIEthics |
| Sunnie Southern @SunnieSouthern T4: This one took me a long time to think about. In the end, it is my insurance company. I would definitely be most upset w/ the high premiums & deductibles we pay that they would make more money from me & my family & provide little value back to us. #hcldr |
| Steve Sisko @ShimCode @ShereesePubHlth @Colin_Hung But wait? Don't many doctors also want Single Payer with Medicaid and Medicare-like reimbursement rates? Fact/Hint; No, they don't. #hcldr #Medicare4All |
| Matthew Katz, MD 🟦 @subatomicdoc @jamesian @GraceCordovano @mkatewarnock Health literacy and digital literacy are both valuable skills to learn early and learn well #hcldr |
| Anthony Leon @anthonynotleon @brentnreed @HBR @Dropbox Thanks for this. Didn't even hear about it! #HCLDR |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl #hcldr T4 Without "telling me", let alone asking consent? ALL of them Most egregious to me would be my family physician (If I had a mental health professional, might be higher up on list) + Any licensed healthcare professional. My bioethics/privacy view = Duty to data protection https://t.co/WIJ63GrK1H |
| Bingle @TheBingle RT @GraceCordovano: @pfanderson I'd love to share my thoughts with you on this: @pfanderson I'd love to share my thoughts with you on this: https://t.co/74SCGXQgDf #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @SueWoods: @hcldr T4: @hcldr T4: All of Them #Hcldr https://t.co/Q8iHJP6YIO |
| Mariah Obiedzinski @MariahWrites RT @SunnieSouthern: T4: T4: This one took me a long time to think about. In the end, it is my insurance company. I would definitely be most upset w/ the high premiums & deductibles we pay that they would make more money from me & my family & provide little value back to us. #hcldr |
| Mariah Obiedzinski @MariahWrites RT @mkatewarnock: T4 If kids are being taught #blockchain and #cryptocurrencies, why not? Perfect fit. #hcldr |
| Bingle @TheBingle RT @AlzheimersLA: A system of accountability and protections for patients. 🎯 #hcldr |
| dighealthdoc @gmathews71 @ShereesePubHlth @Colin_Hung I can tell you how it might have happened - yes there are some bad actors that are just out to make money - but for many, to meet ACA requirements, they would send their records to be transcribed or entered into EHR's in return for free EHR - Practice Fusion & Athenahealth.#hcldr |
| Alzheimer's Los Angeles @AlzheimersLA + accountability and social responsibility. As part of a cohesive tech & media literacy curriculum. #hcldr |
| Janet Kennedy @GetSocialHealth I "liked" this just because it sounded so smart. 😀 #HCLDR |
| Kate Warnock @mkatewarnock RT @subatomicdoc: @jamesian @GraceCordovano @mkatewarnock Health literacy and digital literacy are both valuable skills to learn early and learn well #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @Jim_TheRocktor @GraceCordovano @EMRAnswers @RasuShrestha @CarnegieMellon anything, ever. That's my goal in life. Lol #hcldr |
| Colin Hung @Colin_Hung RT @RossMartin: @Colin_Hung @kymlmartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth @Colin_Hung We feel bad about not having pithy comments for the #hcldr session tonight. Okay, I’m trying to figure out how to make that sound more sincere without actually lying. Thanks for being such an amazing host today! @kymlmartin @BoyleBJ @coryfoscoPCC https://t.co/jXF8sd6M1X |
| Mariah Obiedzinski @MariahWrites RT @researchmatters: Everyone...pretend I'm retweeting this 654,227 times. Thanks! #hcldr #healthliteracy #dataliteracy #scientificliteracy |
| Heather McCullen @H_SalemOaks This thread is a pretty good case study in informed consent on 23andMe. It has a bit of everything. The language not being clear. The interpretation of the data not being clear. Unintended family consequences. #hcldr https://t.co/sb4oQ53mEb |
| Sally James @jamesian @subatomicdoc @GraceCordovano @mkatewarnock Here's to some billionaire endowing all the public libraries with #healthliteracy toolkits and volunteers #hcldr |
| Enlightening Results 💡 @GraceCordovano @pfanderson This case in particular has skewed the data to only include people who were able to afford the $200 kit. Majority of customers identified as higher income, higher education. This data doesn't represent the US population. This is the data driving GSKs research. #hcldr #SDOH |
| Inspire @InspireIsHealth RT @pamressler: The best medicine is listening to the patient #resilience #medx #hcldr https://t.co/fz2aPtNQsy |
| Bingle @TheBingle RT @PatientCritical: Folks, if I sound like a broken record, it's to prove #patientdata is tokenism, and the excuses we get for why it stays this way? Broken record. #hcldr |
| Michael Joseph, PMP @HealthData4All RT @anthonynotleon: @HealthData4All @hcldr I get the entire premise and why it is helpful, I'd love for people to do more with data (I'm in interop). I think it goes into trust as someone said earlier. What are they going to do with my info? Can this hurt me later? Are these protections void if company sells? #HCLDR |
| Colin Hung @Colin_Hung @RossMartin @kymlmartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth @BoyleBJ @coryfoscoPCC Was my pleasure to get the chance to hang out with all of you. May swing by for a selfie before driving home! #hcldr |
| Patient Critical Co-op @PatientCritical Perhaps we DO all sound like broken records tonight, but only because we need to get out of the echo chamber of our peers and push for real change in the real world. #hcldr is awesome but we need to change things, create #healthliteracy & take our #Patientdata back! #hcldr |
| Varadharajan K @VaradhKrish A very timely discussion on #healthcare #data pros and cons. Those interested head over to #hcldr and read up. Nice chat this morning! |
| Inspire @InspireIsHealth RT @researchmatters: #hcldr you might be interested in the outputs from a recent @theNAMedicine meeting on patient health data ownership at that I was fortunate to attend along with @HealthHats and other amazing experts. https://t.co/hGSIkMorNR |
| Sunnie Southern @SunnieSouthern RT @TheBingle: @SunnieSouthern @GraceCordovano @dsgold That was a complete travesty. The Tuskegee Experiment was another. Time proves the NYU Professor story is at the very least a Big Coincidence. @JudgeJudy has said she doesn't believe in coincidence. #hcldr |
| HCLDR Moderator @hcldr That’s a wrap. Thank you for joining the #hcldr tweetchat tonight. Your time, tweets and comments are greatly appreciated! |
| PF Anderson @pfanderson@disabled.social @pfanderson @gmathews71 @npiercePhDRN ... if a new treatment derives from yr data ... But then, to receive shares or $$, you give up privacy. No matter how you slice it, there's an ethical scenario that is potentially problematic. The real ? is what research & answers do we want? What will we give to get them? #hcldr |
| Colin Hung @Colin_Hung RT @researchmatters: Everyone...pretend I'm retweeting this 654,227 times. Thanks! #hcldr #healthliteracy #dataliteracy #scientificliteracy |
| Cred Collab Group @credcollab @ShimCode @ShereesePubHlth @Colin_Hung No they don't at all. I have talked to a lot of Doctors and they are against it, you are absolutely correct. #hcldr |
| Gregg Masters MPH @2healthguru Wait til the @GOP eliminates #ACA prohibition on pre-existing conditions and watch the so-called ‘health insurance’ (aka non bank, transaction processors) leverage #bigdata to transfer risk to you. #hcldr |
| Sally James @jamesian @researchmatters We need an emoji for health literacy, we can drop in #hcldr 📔😷 |
| Alzheimer's Los Angeles @AlzheimersLA And contributes to why many communities don't trust and therefore don't access healthcare systems. #hcldr |
| Jennifer Michelle, MPH (she) @MMSJennifer RT @EMoriartyWade: I’m so sorry. This is absolutely horrible! #hcldr |
| Sarah Greene @researchmatters I agree. They have so much info on us and can invert the premium equation in a heartbeat. (no pun intended). #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @gmathews71 @npiercePhDRN Yes, please. PLEASE #hcldr |
| Enlightening Results 💡 @GraceCordovano @gmathews71 @ShereesePubHlth @Colin_Hung Would you say hospital administrators, American Medical Association, & payers to blame? #hcldr |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @mkatewarnock C @hu_manityco @RichieEtwaru #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @ChronicallyJess: @pfanderson @hcldr I totally agree that it is a legislative nightmare with insurance companies in the US... so let’s learn from it and change for how we classify, protect, and use patient data. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @GraceCordovano: @pfanderson I'd love to share my thoughts with you on this: @pfanderson I'd love to share my thoughts with you on this: https://t.co/74SCGXQgDf #hcldr |
| Sunnie Southern @SunnieSouthern @fredtrotter @GraceCordovano @dsgold Hi @fredtrotter!! It is amazing to see you hear. What a treat! #hcldr |
| HCLDR Moderator @hcldr Don’t forget to use the #hcldr hashtag during week for interesting healthcare/leadership posts, pics, articles & news |
| Colin Hung @Colin_Hung RT @SunnieSouthern: T4: T4: This one took me a long time to think about. In the end, it is my insurance company. I would definitely be most upset w/ the high premiums & deductibles we pay that they would make more money from me & my family & provide little value back to us. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA RT @researchmatters: Everyone...pretend I'm retweeting this 654,227 times. Thanks! #hcldr #healthliteracy #dataliteracy #scientificliteracy |
| Kimberly George @kimberlyanngeo RT @brentnreed: T4 Well, last week an article in @HBR indicated that @Dropbox had shared information about a lot of its users without their consent, so there’s that. https://t.co/UyPj4ihLOj #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc @endocrine_witch @RasuShrestha @CarnegieMellon Two smart men with similar opinions I think. From General Bradleys Armistice Day speech 1948 (per Wikiquote) #hcldr https://t.co/WJ1N3rbwg0 |
| Alzheimer's Los Angeles @AlzheimersLA RT @jamesian: @researchmatters We need an emoji for health literacy, we can drop in #hcldr 📔😷 |
| Tami Dew Rich, MBA @bostonheartmom T4 “100% behind/Help me in my care” #hcldr @Colin_Hung =How I feel being 3rdGeneration in #FraminghamHeartStudy Used to say “I’m research royalty!” Now I say “What’s in it for ME? Where’s MY data? How about some HEALTH COACHING?” Finally@ 6/17 Ckup I rec’d🍎⌚️& wireless BPCuff |
| Sally James @jamesian @npiercePhDRN @GraceCordovano @mkatewarnock YES! I wrote about #healthliteracy for the @ALALibrary Also did a podcast. I think ppl would love it. #hcldr |
| Heather McCullen @H_SalemOaks @PatientCritical I've been thinking about this a lot lately. It's actually on my work ToDo list. I need to expand my social media consumption to the less warm and fuzzy corners of the internet. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA RT @pfanderson: @PracticalHIT @Colin_Hung @MariahWrites @GraceCordovano @gmathews71 @S4PM A big part of the fear is people don't realize that the 23andMe data is actually not terribly useful or actionable for most things at the individual level. It only has power in the aggregate, in large datasets. Why stop now? #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc RT @jamesian: @subatomicdoc @GraceCordovano @mkatewarnock Here's to some billionaire endowing all the public libraries with #healthliteracy toolkits and volunteers #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @researchmatters #hcldr Category of what bioethics folks read in their down time! This one's so rough, though, that I have to read another book after each chapter. Horrific examples of torture disguised as medical research... https://t.co/ZlYDIrQ701 |
| Rasu Shrestha MD MBA @RasuShrestha Companies that up their game with their moral compass, will win. Trust, at the end of the day, is the most valuable commodity. #HCLDR https://t.co/AIcxov55sT |
| Kate Warnock @mkatewarnock @ShereesePubHlth @Jim_TheRocktor @GraceCordovano @EMRAnswers @RasuShrestha @CarnegieMellon After waiting 40 minutes today at my daughter's doc office, you are officially My. Hero. #hcldr |
| Annette McKinnon @anetto T4 I would be upset if our public health system let a for-profit company have access to our public health data. Any use of this should be for the good of the public and the taxpayers who support our health system #hcldr |
| Colin Hung @Colin_Hung @drlfarrell Thanks for listening in Liam! #hcldr |
| burtrosen 🟦 @burtrosen great chat as always. So much action that it's hard to keep up. Have a great night all, and remember, its #NationalAvacadoDay so go grab some #guac #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba Running over to #HTreads guys. Thanks, @Colin_Hung. Join us for a great chat on childhood traumas & their effects on health if you can. Have a great week everyone #hcldr https://t.co/WX8STZq16b |
| Rasu Shrestha MD MBA @RasuShrestha RT @subatomicdoc: @endocrine_witch @RasuShrestha @CarnegieMellon Two smart men with similar opinions I think. From General Bradleys Armistice Day speech 1948 (per Wikiquote) #hcldr https://t.co/WJ1N3rbwg0 |
 | Danielle Siarri @innonurse RT @RasuShrestha: Companies that up their game with their moral compass, will win. Trust, at the end of the day, is the most valuable commodity. #HCLDR https://t.co/AIcxov55sT |
| Erin Moriarty Wade @EMoriartyWade I think this depends on if your kids are lucky enough to be healthy. #chronicillness kids/teens/adults might have different concerns. #hcldr |
| Colin Hung @Colin_Hung RT @SandraWoodsMtl: @researchmatters #hcldr Category of what bioethics folks read in their down time! This one's so rough, though, that I have to read another book after each chapter. Horrific examples of torture disguised as medical research... https://t.co/ZlYDIrQ701 |
| Kez! @denniskenez RT @GraceCordovano: @EMRAnswers @RasuShrestha @CarnegieMellon I believe patients should have their own privacy policy that they bring to healthcare organizations & the ecosystem. Working on a piece...stay tuned. #hcldr |
| Erin Moriarty Wade @EMoriartyWade RT @EMRAnswers: T4: |
| Ñick van Terheyden, MD -Dr Ñiçk 🇺🇸🇬🇧🇮🇪🇳🇬🌍 @drnic1 @2healthguru @GOP Risk already shifted imo #hcldr (or much of it) |
| Brian Ellerman @BrianLRMan @hcldr You rock @Colin_Hung & gang! See you on the twitterstream real soon... #hcldr |
| Bingle @TheBingle @ShereesePubHlth @AngelaHemans @GraceCordovano @EMRAnswers @RasuShrestha @CarnegieMellon Now I understand you..... We both may be crazy! #hcldr |
| Sally James @jamesian @subatomicdoc @GraceCordovano @mkatewarnock Podcast about health lit for librarians. https://t.co/kgTgE5JINX #hcldr |
| Sunnie Southern @SunnieSouthern RT @PatientCritical: Perhaps we DO all sound like broken records tonight, but only because we need to get out of the echo chamber of our peers and push for real change in the real world. #hcldr is awesome but we need to change things, create #healthliteracy & take our #Patientdata back! #hcldr |
| Colin Hung @Colin_Hung @burtrosen Have a great night Burt. Thanks for being here. So excited for your new gig. Stay in touch my friend. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA Yes! Especially if made accessible and relevant. #hcldr |
| Sarah Greene @researchmatters #hcldr interesting coda to the @23andMe convo. Their Terms of Use include this gem, which combined with genetic data makes for a far richer data resource. https://t.co/FxK8uAsVUF |
| Cred Collab Group @credcollab Thanks for having me. See you next week! #hcldr https://t.co/Eueshi6R4X |
| Colin Hung @Colin_Hung @BrianLRMan @hcldr Thanks for being here Brian. Glad you enjoyed tonight's chat. Have a great week #hcldr |
| Colin Hung @Colin_Hung If you are still up for more Twitter-chatting. Head on over to our friends at #HTReads for more scintillating conversation #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @GraceCordovano Thanks! I'll take a look! I fight for both. Openness when people have the privilege to afford it, privacy when it protects them. People don't realize that HIPAA doesn't cover all health info, just stops HCPs+staff from sharing. Big prob w/ HMIS/homeless database #hcldr |
| Sunnie Southern @SunnieSouthern RT @jamesian: @GraceCordovano @mkatewarnock Just wish #healthliteracy in general, including data, was taught anywhere. #hcldr |
| Shereese Maynard, MS; MBA 😷 She/Her @ShereeseMayMba @2healthguru I'm not, perhaps I misunderstood you. I apologize #hcldr |
| Sunnie Southern @SunnieSouthern RT @GraceCordovano: @mkatewarnock Data de-identification, privacy, transparency should be taught in schools. #hcldr |
| Wes Wilson @WesleyWilson @SandraWoodsMtl thats pretty much true of all data everywhere though... from ripping a show on Netflix to Snowden's documents... you can't really stop someone from copying & sharing read-only data if they really want to. laws can add punishment though #hcldr |
| Sunnie Southern @SunnieSouthern RT @mkatewarnock: T4 Not a response but a question: T4 Not a response but a question: is this a generational concern? Do my teenaged kids even think about data privacy when using apps? Not so much...so will they care about how their health data is used when they intersect w/ the health system? Not so sure...#hcldr |
| Sarah Greene @researchmatters Ciao for now, amazing humans! #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc RT @jamesian: @subatomicdoc @GraceCordovano @mkatewarnock Podcast about health lit for librarians. https://t.co/kgTgE5JINX #hcldr |
| Brent Reed @brentnreed What a lively and informative #hcldr chat tonight! Well done, @Colin_Hung! I'll definitely be re-reading it again tomorrow. |
| Colin Hung @Colin_Hung @credcollabgroup Thanks for being here tonight ! #hcldr |
| Enlightening Results 💡 @GraceCordovano @ColtonOrtolf @pfanderson One reason why 23andMe can not claim to be driving research for the greater good of all people. Bringing a drug to market also does not gurantee access & affordability. Patients keep paying & paying & paying. #hcldr |
| Matthew Katz, MD 🟦 @subatomicdoc RT @pfanderson: @GraceCordovano Thanks! I'll take a look! I fight for both. Openness when people have the privilege to afford it, privacy when it protects them. People don't realize that HIPAA doesn't cover all health info, just stops HCPs+staff from sharing. Big prob w/ HMIS/homeless database #hcldr |
| Erin Moriarty Wade @EMoriartyWade I also wonder if it pulls more people of mixed races/ethnicities like my husband who was curious to learn about his Asian-ness and did https://t.co/rncm0GcA1J. #hcldr |
| Anthony Leon @anthonynotleon @hcldr A4 - Not sure of an org but I do find it funny on LinkedIN a lot of the users comment they deleted Facebook because of the selling of data. They don't get the irony of it #HCLDR |
| Annette McKinnon @anetto @hcldr T1 Was that the stated intention of 23andMe at the onset? Using the data that we paid them to process so that they could partner with Pharma once they had enough of it? #hcldr |
| Colin Hung @Colin_Hung @EMRAnswers @JoeBabaian Appreciate your support and friendship Linda! #hcldr |
| Sunnie Southern @SunnieSouthern @jamesian @npiercePhDRN @GraceCordovano @mkatewarnock @ALALibrary Please share the link to your podcast on #healthliteracy Would love to listen. #hcldr |
| Alzheimer's Los Angeles @AlzheimersLA @npiercePhDRN Us, too. To start, it means approaching each community differently, and having staff who are competent and responsive. #hcldr |
| Colin Hung @Colin_Hung @researchmatters Enjoy the rest of your week Sarah. Appreciate your tweets tonight #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @GraceCordovano So, are you saying that they restricted the GSK data set to only those 23andMe customers who paid the higher fee for the kit? That's about triple what I paid. Or is that the assumption? #hcldr |
| Kate Warnock @mkatewarnock @drnic1 @hu_manityco @RichieEtwaru Just saw (but saved for reading later) a press release from @hu_manityco today! Will check them both out, thx Nick #hcldr |
| Iris Thiele Isip Tan MD, MSc @endocrine_witch RT @subatomicdoc: @endocrine_witch @RasuShrestha @CarnegieMellon Two smart men with similar opinions I think. From General Bradleys Armistice Day speech 1948 (per Wikiquote) #hcldr https://t.co/WJ1N3rbwg0 |
| Annette McKinnon @anetto RT @GraceCordovano: @pfanderson This case in particular has skewed the data to only include people who were able to afford the $200 kit. Majority of customers identified as higher income, higher education. This data doesn't represent the US population. This is the data driving GSKs research. #hcldr #SDOH |
| Sally James @jamesian @SunnieSouthern @npiercePhDRN @GraceCordovano @mkatewarnock @ALALibrary Thanks. Here it is https://t.co/kgTgE5JINX Was answering Qs from the moderator. #hcldr Feel free to give me feedback by DM |
| Jennifer Michelle, MPH (she) @MMSJennifer What about a right to be forgotten, like with the #Gdpr? Why would we want more protections for our shopping data than our medical data? #hcldr |
| Enlightening Results 💡 @GraceCordovano Loved every minute! Thanks for a lightening fast discussion. Shoutout to @Colin_Hung & @JoeBabaian Until next time...#hcldr |
| Colin Hung @Colin_Hung @brentnreed It was indeed a very "lively" chat - meaning that my fingers hurt and my phone is literally burning up :) Have a great week Brent #hcldr |
| Patient Critical Co-op @PatientCritical Thx to @Colin_Hung & @JoeBabaian for creating a cosy, safe place to explode some big ideas. Let's take those ideas into uncomfortable places & conversations next...that's the only way we'll ever galvanize the change we feel safe talking about here. 'Night all! #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @mkatewarnock #hcldr Health/genetic data is different. What if someday they're refused job, insurance, mortgage because of risk profile? Or told "we won't treat your disease because of risk for x"? Or their kids' risk?... https://t.co/s4ee3vMOgL |
| Erin Moriarty Wade @EMoriartyWade This also raises the question of how people feel about #diseasemanagement programs that you can flagged for through your insurance co to save your employer money. #hcldr |
| Kistein Monkhouse, MPA @KisteinM Great #hcldr tweet chat. Thoroughly lurking....most importantly @colin your blog post is spot on and filled with plenty of #FoodForThought |
| Anthony Leon @anthonynotleon RT @MMSJennifer: What about a right to be forgotten, like with the #Gdpr? Why would we want more protections for our shopping data than our medical data? #hcldr |
| Sunnie Southern @SunnieSouthern RT @EMoriartyWade: This also raises the question of how people feel about #diseasemanagement programs that you can flagged for through your insurance co to save your employer money. #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @2healthguru @GOP Gregg, you know that you can't make any sort of diagnosis from anything @23andMe gives you for data. All it gives is a hint, a clue. This is not diagnostic data #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @RasuShrestha: Companies that up their game with their moral compass, will win. Trust, at the end of the day, is the most valuable commodity. #HCLDR https://t.co/AIcxov55sT |
| Colin Hung @Colin_Hung @PatientCritical @JoeBabaian Thanks for your continued support. It's appreciated. Thoughtful discussion = always a good thing but sadly becoming a bit more rare these days #hcldr |
| Kate Warnock @mkatewarnock @npiercePhDRN @jamesian @GraceCordovano LOVE this idea...wonder if you'd get more traction if you offered it to patient advocacy groups? Those truly invested? And let it spread from there... #hcldr |
 | Cherise Shockley @BonafideCherise RT @jamesian: @GraceCordovano @mkatewarnock Just wish #healthliteracy in general, including data, was taught anywhere. #hcldr |
| Michael Joseph, PMP @HealthData4All @gmathews71 @anthonynotleon @hcldr Seems like Robin Hood in reverse. It's true that top hospitals have access to top researchers, doctors, etc...and these massive clinical datasets. But many like @ClevelandClinic are making it easier & affordable to seek 2nd opinion & treatment. #hcldr #patientexperience |
| Matthew Katz, MD 🟦 @subatomicdoc @GraceCordovano @Colin_Hung @JoeBabaian Yes, thanks gentlemen for moderating and to everyone participating; have a great night! #hcldr |
 | Mohamad Arif Ali @mhealth1 RT @EMoriartyWade: This also raises the question of how people feel about #diseasemanagement programs that you can flagged for through your insurance co to save your employer money. #hcldr |
| Colin Hung @Colin_Hung @GraceCordovano @JoeBabaian Have a fantastic week Grace. Love all that you do for patients, healthcare and expanding our minds with words. See you online! #hcldr |
| Colin Hung @Colin_Hung @subatomicdoc @GraceCordovano @JoeBabaian Thanks Matt. Loved that you were able to join us tonight #hcldr |
| Jamie Roger @JamieRoger8 @ShereesePubHlth No worries, I was tuning into #hcldr and saw how engaged everyone was. Hope that doesn't take away from this topic though@! #htreads |
| PF Anderson @pfanderson@disabled.social @pfanderson @RasuShrestha @hcldr @Colin_Hung @nickisnpdx @JoeBabaian @MightyCasey @innonurse @EMRAnswers @jameyedwards @DrSimpsonHSR That's why I was so impressed with their choice of GSK as a partner. People would freak no matter what pharma partner was chosen, but GSK has a proven track record as "good folk who try" https://t.co/UxDYQ4g3cL #hcldr |
| Enlightening Results 💡 @GraceCordovano @pfanderson There are varying prices to their kits. Seems now there's a sale for $139. To be included in the dataset, you need to pay to purchase the kit. That is exclusionary & not representative of real world populations to drive development of medications. #hcldr |
| Bingle @TheBingle Although my brain wasn't keeping up with ALL the data received; Thanks Colin and ALL for a great chat. #hcldr PS- Anyone wanting my data I am open for HIGHEST BIDDER..... |
| Erin Moriarty Wade @EMoriartyWade Thanks for another great discussion @JoeBabaian and @Colin_Hung and #hcldr friends! |
| Rasu Shrestha MD MBA @RasuShrestha @pfanderson @hcldr @Colin_Hung @nickisnpdx @JoeBabaian @MightyCasey @innonurse @EMRAnswers @jameyedwards @DrSimpsonHSR Thanks for that share. Important for folks to get this perspective. #hcldr |
| Michael Joseph, PMP @HealthData4All Hey #hcldr, thanks; that was fun! (Especially since knee pain is finally subsiding.) |
 | Nokia Healthcare @nokiahealthcare RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcldr https://t.co/SrUkWTh3xX |
| Kate Warnock @mkatewarnock @EMoriartyWade Entirely true! Can certainly see how fortunate (and therefore unaware) my kids are living in their healthy state. Would be VERY interesting to see their peers w/ #chronicillness broach the topic, start the convo, elevate awareness. #hcldr |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl #hcldr Thanks for a fast-tastic chat everyone! Using just a phone, with one hand due to CRPS flare, so was lagging behind tonight😖 Hugs to @Colin_Hung & @JoeBabaian for leading this pack! https://t.co/vv7h1iCnYR |
| PF Anderson @pfanderson@disabled.social @pfanderson @ColtonOrtolf @GraceCordovano There are so many assumptions being tossed back and forth in this conversation that I don't know where to begin! Short answer, no, it's not a 23andMe problem; and NO, it's not stuff that will only benefit the "upper class" #hcldr |
| Anthony Leon @anthonynotleon @EMoriartyWade It's why my Mom did it. When I explained, they'll sell her info later, she didn't realize that. Like most consumers, she went through the TOS like Itunes. Not saying she wasn't wrong for skimming through but that seems more norm for avg consumer #HCLDR |
| Nick Adkins @nickisnpdx RT @RasuShrestha: Companies that up their game with their moral compass, will win. Trust, at the end of the day, is the most valuable commodity. #HCLDR https://t.co/AIcxov55sT |
| Michael Joseph, PMP @HealthData4All RT @RasuShrestha: Companies that up their game with their moral compass, will win. Trust, at the end of the day, is the most valuable commodity. #HCLDR https://t.co/AIcxov55sT |
| Gregg Masters MPH @2healthguru @ShereesePubHlth Why? No apology necessary. My point is you may have that power in a private or commercial setting. Whereas publically funded plans esp Medicaid has no such customer ‘standing’. #hcldr |
 | SoGiAm @H0U3 @BirdBrayn #ThankYOU Hal, Ian @LEAD_Coalition, Frank @A1arch, Joe @OJoeUSA and other #Tweeple for continually, consistently #encouraging my 97 year #youngin' and I to #walk, #Exercise4Life daily! The human body is built to #move! #MoveItOrLoseIt #ENDALZ #hcsm #hcldr #MedEd #AmWriting #F4F |
 | Michael Scranton @MWE_Michael RT @RasuShrestha: Companies that up their game with their moral compass, will win. Trust, at the end of the day, is the most valuable commodity. #HCLDR https://t.co/AIcxov55sT |
| Enlightening Results 💡 @GraceCordovano @npiercePhDRN @jamesian @mkatewarnock I am working with my local school system to build a curriculum that teaches #HealthcareExpLiteracy incrementally from K-12 to present to the school board. #hcldr |
| Sunnie Southern @SunnieSouthern RT @Colin_Hung: @PatientCritical @JoeBabaian Thanks for your continued support. It's appreciated. Thoughtful discussion = always a good thing but sadly becoming a bit more rare these days #hcldr |
 | Catalyst HTI @CatalystHTI RT @RasuShrestha: We seriously need to have more conversations about ethics and moral compass; in this day and age of #digitalhealth. CMU had an amazing first of its kind conference earlier this year. #HCLDR #Pittsburgh @CarnegieMellon Checkout: #CMUAIEthics |
| Colin Hung @Colin_Hung Goodnight #hcldr Enjoyed the spirited discussion. Bonus that I was able to do it outdoors in fantastic weather in historic Distillery District in Toronto. See you next week. https://t.co/0um5Pv5uNr |
| Colin Hung @Colin_Hung @SandraWoodsMtl @JoeBabaian Thank YOU for being here Sandra #hcldr |
| Sunnie Southern @SunnieSouthern RT @RasuShrestha: Companies that up their game with their moral compass, will win. Trust, at the end of the day, is the most valuable commodity. #HCLDR https://t.co/AIcxov55sT |
| Gregg Masters MPH @2healthguru Got it. A piece of the puzzle. Just wait for the #bigdata mashups! #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson @GraceCordovano It is true that 23andMe data doesn't represent the world. Many countries don't allow DTC genetic tests to be offered. Some of their research partners have offered kits as discounted. Lowest I heard was $25. Compare to clinical genetic tests at thousands of dollars #hcldr |
| Anthony Leon @anthonynotleon @HealthData4All @gmathews71 @hcldr @ClevelandClinic I had a random vet reach out to me after reading a post I did on SecondOpinions. The cost of a second opinion from CC or Mayo was a bit out of his range though ($800 - 1k?) and the VA wouldn't let him get one. Still looking for ways to help him. #HCLDR |
| Sunnie Southern @SunnieSouthern RT @GraceCordovano: T2) Majority of people do NOT know their personal health information is de-identified & sold. This is a shortcoming of HIPAA & lack of #HealthcareExpLiteracy. Signing a consent form for a bait-n-switch buisness model w/lack of transparency is unforgivable. #hcldr |
 | Sahba Ferdowsi DO (conciergedoc) @DrFerdowsi RT @RasuShrestha: Companies that up their game with their moral compass, will win. Trust, at the end of the day, is the most valuable commodity. #HCLDR https://t.co/AIcxov55sT |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @WesleyWilson #hcldr True, but I'd read that the info sent to Australians was that patients would have to consent to data share. If that's stated, then it needs to be part of privacy by design plan... |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @GraceCordovano: If you are a @23andMe customer, did you chose to opt-out of their "research" after the announcement of their partnership with @GSK? #hcldr @S4PM #HITsm #HTReads #bcsm #lcsm #btsm #pinksocks #medtwitter @savvy_coop #patientchat #MEQAPI @CitizenHealthio @IrmaRaste @gmathews71 |
| Kate Warnock @mkatewarnock Whoa. Don't know about IP esp if your school system is involved, but would you consider making this cloud-based so more could access it? Think there's be TONS of interest nationally! #hcldr |
| Kimberly George @kimberlyanngeo RT @RasuShrestha: Companies that up their game with their moral compass, will win. Trust, at the end of the day, is the most valuable commodity. #HCLDR https://t.co/AIcxov55sT |
| Sunnie Southern @SunnieSouthern RT @PatientCritical: A4: most people don't read EULA's: A4: most people don't read EULA's: Apple forbade you from using iTunes to create nuclear weapons. Google claimed perpetual license to publish & display passwords & everything you did online. SOCIETY NEEDS A USER-CENTRIC, *&* REVOKABLE DATA FRAMEWORK https://t.co/SW0BRA7VFB #hcldr |
| PF Anderson @pfanderson@disabled.social @pfanderson RT @EMRAnswers: |
| Erin Moriarty Wade @EMoriartyWade @anthonynotleon @HealthData4All @gmathews71 @hcldr @ClevelandClinic In what specialty? Maybe if enough #hcldr peeps retweet this we can help him...#hcldr |
| John @joltdude RT @EMRAnswers: |
#HCLDR content from Twitter.