#HCLDR Transcript

Healthcare social media transcript of the #HCLDR hashtag.
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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
Nick van Terheyden, MD @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/A38…
John Cloonan @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! ✈️ Health IT Dog! 🐕 Paw-pulation Health! @HealthITdog
Chuck! & JETS! The @HealthITdog! Here for #hcldr! https://t.co/nnwGMyObXT
Colton Ortolf @ColtonOrtolf
Hi Everyone - glad to be back in the swing this week. Looking forward to tonight's topic! #hcldr
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
ShereeseM, MS/MBA @ShereesePubHlth
@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.
ShereeseM, MS/MBA @ShereesePubHlth
Hello all. I'm Shereese, the happiest, most dedicated healthcare strategist on the East Coast. How is everyone tonight? #hcldr https://t.co/HGq7Izd7Vs
HCLDR Moderator @hcldr
Let’s start off with introductions! Tell us your name, what you do and where you are based #hcldr
David Goldsmith @dsgold
Been a long time since I’ve joined the #hcldr gang…good to be back and eager to dig in to this topic.
Dennis Kenez @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
Madhu⚕️Singh @thinkalot
RT @2healthguru: c #hcldr #phychat #ACOchat https://t.co/jvYQphO6Lt
Carol Bush @TheSocialNurse
RT @hcldr: Behind this blue circle is @Colin_Hung blogger, community builder, marketer, #healthIT true believer from Toronto, Canada #hcldr
Shannon Arturi @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 @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
ShereeseM, MS/MBA @ShereesePubHlth
@70mq Hey Josephine. How's your summer? #hcldr
Colton Ortolf @ColtonOrtolf
I am a @KelloggSchool MBA and digital product manager passionate about healthcare technology; based in Chicago but currently in Boston #hcldr
gmathews71 @gmathews71
Hey everyone - George here - happy to be here!! #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
Gregg Masters MPH @2healthguru
RT @drnic1: Good evening fellow #hcldr folks - The Whisky Librarian checking in with glass in hand: The Amarut Fusion Single Malt Dark and…
Nick van Terheyden, MD @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:)
David Goldsmith @dsgold
@credcollabgroup This is about the most welcoming group you’ll find on Twitter. Glad you could join us! #hcldr
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.
Gregg Masters MPH @2healthguru
RT @hcldr: Tonight on #hcldr we’re talking about Selling Healthcare Data. Our blog has more info - https://t.co/TT8fovJT8x https://t.co/A38…
ShereeseM, MS/MBA @ShereesePubHlth
@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 *\O/* @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
Carol Bush @TheSocialNurse
RT @RasuShrestha: @Colin_Hung @kymlmartin @RossMartin @LGin412 @nickisnpdx @JoeBabaian @ShereesePubHlth Food for thought....and thought for…
Colin Hung @Colin_Hung
@johncloonan @kinetixtalent Hello John. Thanks for being here my friend #hcldr
ShereeseM, MS/MBA @ShereesePubHlth
@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!
Shannon Arturi @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)
Nick van Terheyden, MD @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 @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 @teaminspire
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
Brian Ellerman @BrianLRMan
Hello all, Brian from 20% chance of rain Tucson. Director of @B2EHub (sustainability, digital health, and AI incubator) and @ArizonaForge looking forward to tonight's #hcldr discussion. Disclosure: I have invested in 23andMe
David Goldsmith @dsgold
@burtrosen Back at ya! Safe to assume that after a few days in Dallas in July you’re ready to get back to the northwest! #hcldr
Laura Appel @lauradianeappel
Laura, Hospital trade association person. #hcldr
ShereeseM, MS/MBA @ShereesePubHlth
@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
Enlightening Results @GraceCordovano
@dsgold Hi David! Glad you could join. This one's gonna be good #hcldr
burtrosen @burtrosen
@ShereesePubHlth @drnic1 i haven't gone anywhere, just a little quieter! #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 @Ros
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
Colin Hung @Colin_Hung
@burtrosen @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth Absolutely! #hcldr
ShereeseM, MS/MBA @ShereesePubHlth
RT @RasuShrestha: @Colin_Hung @kymlmartin @RossMartin @LGin412 @nickisnpdx @JoeBabaian @ShereesePubHlth Food for thought....and thought for…
Gregg Masters MPH @2healthguru
Joining from South #LakeTahoe. Hold space for those in harms way. Looks s if wildfires in California. Entire Tahoe basin is smokey. #hcldr
Nicole P., RN PhDc @npiercePhDRN
Hello! Checking in from Chicago - looking forward to tonight's chat! #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 @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 AntonietaDiaz @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
Jodi Dragon @JodiOrvisDragon
RT @BarbyIngle: I am @BarbyIngle, Pres of International Pain Foundation @powerofpain and chronic pain patient. I am based in AZ (most of th…
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
Gregg Masters MPH @2healthguru
Yesterday’s sunset. #hcldr https://t.co/Kcrcr6qTUL
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
Carol Bush @TheSocialNurse
Hi! Carol, Oncology nurse activist, consultant & partner w @GetSocialHealth in @HMNWriters. Waving from Kansas- the Middle Coast! #hcldr
burtrosen @burtrosen
@dsgold im developing a great appreciation for my hotel room! #hcldr
Enlightening Results @GraceCordovano
@MariahWrites Nice to see you Mariah #hcldr
Nicole P., RN PhDc @npiercePhDRN
@MariahWrites Hi Mariah! Where at in Iowa? I am still finishing up my PhD there - now in Chicago! #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
David Goldsmith @dsgold
@Colin_Hung @GraceCordovano @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth I second that. Informative, compelling and provocative. This is a topic consuming a lot more attention in the patient community — and rightly so. #hcldr
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 :)
Carol Bush @TheSocialNurse
RT @hcldr: We have a lot of remarkable folks with us tonight & lots of ideas will be shared – please try to stay on topic. #hcldr
Carol Bush @TheSocialNurse
RT @hcldr: Let’s get ready for T1 in just 1 minute #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? #hcl
Barby Ingle *\O/* @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 N. 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
Nick van Terheyden, MD @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? #hcl
Gregg Masters MPH @2healthguru
10 years in Plano was enough for me! #hcldr
Colin Hung @Colin_Hung
RT @RasuShrestha: Should we all be asking: "Hey, is that my data you're selling?" Awesome and very current topic for tonight's #HCLDR chat…
Bingle @TheBingle
@MariahWrites Hi Mariah! Always good to see some great people in #hcldr
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.
Nicole P., RN PhDc @npiercePhDRN
@researchmatters We could be the same person - my bio is very similar! Nice to meet you! #hcldr
Jodi Dragon @JodiOrvisDragon
RT @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…
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
Carol Bush @TheSocialNurse
RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcl
Robert Blount @RBlount
#hcldr lurking fro@ #SFO https://t.co/fZPFSjvdDE
ChronicallyJess @ChronicallyJess
Hi guys! A few minutes late. I’m excited to hear everyone’s thoughts and experience with this topic! #hcldr
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? #hcl
Mariah Obiedzinski @MariahWrites
@npiercePhDRN Cedar Rapids area. Awesome! At the U? #hcldr
Brent N. 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
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
Nick van Terheyden, MD @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 💖
Brian Ellerman @BrianLRMan
T1: Yes, upside to enriching genome understanding >> risk to personal re-identification or hypothetical genetic discrimination. Understanding leads to smarter, more informed use. That said, when and where data sold, owner (you) should be compensated. #hcldr
Angela Hemans @AngelaHemans
RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcl
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 p…
ShereeseM, MS/MBA @ShereesePubHlth
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: "Hey, is that my data you're selling?" Awesome and very current topic for tonight's #HCLDR chat…
Nick Adkins @nickisnpdx
T1 yes. https://t.co/r5naNfd93V “Terms of Service”. i read them, and i accepted them. #hcldr
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 p…
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
ShereeseM, MS/MBA @ShereesePubHlth
RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcl
Colin Hung @Colin_Hung
@ChronicallyJess No worries. We're just getting started. Perfect timing #hcldr
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 pla…
Michael Joseph, PMP @HealthData4All
Greetings all. Happy to join #hcldr in post-op recovery mode.
gmathews71 @gmathews71
RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcl
David Goldsmith @dsgold
T1 I’m comfortable with it in the abstract, meaning there’s potentially real value from a research and drug dev standpoint. But 23andMe should have engaged its customers in a far more transparent way, esp with an opt-in. #hcldr
Rasu Shrestha MD MBA @RasuShrestha
@RBlount In the shadows, eh? Awesome photo. PS: Safe travels my friend. #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
@anthonynotleon @hcldr Totally agree. #hcldr
Mariah Obiedzinski @MariahWrites
RT @burtrosen: T1: I wish they would give de-identified but aggregate data to everyone. its a shame that is going to one pharma company. th…
Nicole P., RN PhDc @npiercePhDRN
T1 - I have grappled with this since news broke. I think it comes down to their definition of de-identified that bothers me. There is no way to fully de-identify DNA by its very nature. Therefore, it would require consent - and that was clearly not obtained #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
Colton Ortolf @ColtonOrtolf
T1: Yes assuming patients provide explicit consent (which I believe is the case). While drug companies are often demonized for good reason, GSK can also develop some novel therapies using our data. #hcldr
Iris Thiele Isip Tan @endocrine_witch
RT @GraceCordovano: T1) The privacy policy as written emphasized data use for "research purposes" or "scientific findings", not mass aggreg…
Josephine Borrillo @70mq
@burtrosen exactly! why one #bigpharma company and all of them #HCLDR
ShereeseM, MS/MBA @ShereesePubHlth
@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
Nick van Terheyden, MD @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
ShereeseM, MS/MBA @ShereesePubHlth
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: “Ident…
Carol Bush @TheSocialNurse
A1. Yes. I'm uncomfortable, however maybe because I am uninformed about informed consent in this scenario. As a former research nurse it feels icky #hcldr
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
gmathews71 @gmathews71
@hcldr T1: No, I’m not comfortable with it – re-identification techniques these days are more robust than ever, and many of the de-identification techniques required were from the days of HIPAA ~20 years ago – rigorous for the time, but almost child’s play now...#hcldr
Sarah Greene @researchmatters
Burt that was exactly the reaction I had. Why not find the broadest possible public benefit? #hcldr
Michael Chaikof @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
Gregg Masters MPH @2healthguru
T1 was it disclosed? Was kit cost offset by revenue assumptions from sales? If yes to both yes, with a incentive to donors. #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
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 wi…
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 @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: “Ident…
Angela Hemans @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 aggreg…
Matthew Katz, MD @subatomicdoc
RT @lauradianeappel: T1 Not comfortable. Not confident in the product. Not confident (yet) that “research” won’t be used inappropriately fo…
Nicole P., RN PhDc @npiercePhDRN
@H_SalemOaks Heather - that is such a great point. However, in a way, we do this a lot in healthcare. We charge for services and then use EHR data. I personally never considered those implications. #hcldr
John Cloonan @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: I wish they would give de-identified but aggregate data to everyone. its a shame that is going to one pharma company. th…
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
Nick van Terheyden, MD @drnic1
@DukePHC The problem with that is there is no de-identification of #genomic data in the age of #bigdata #hcldr
Dennis Kenez @denniskenez
T1 No. Not even close to their stated mission. They should disclose their data selling intent up front to 'customers' #hcldr
Virginia @PracticalHIT
@hcldr #hcldr @PracticalHIT happy summer hello
Brent N. 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 pla…
Shannon Arturi @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
iPain Foundation @powerofpain
RT @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…
Colin Hung @Colin_Hung
RT @burtrosen: T1: I wish they would give de-identified but aggregate data to everyone. its a shame that is going to one pharma company. th…
iPain Living Magazine @iPainFoundation
RT @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…
John Cloonan @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. Aggregat…
Carol Bush @TheSocialNurse
@nickisnpdx Ok...great, you answered my question about consent, then! Thanks @nickisnpdx #hcldr
Ken Taylor @KenRayTaylor
RT @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…
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 @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 bla…
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
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
Gregg Masters MPH @2healthguru
Climate change is real. We’re feeling it. And many are paying the price with their lives. #hcldr
ShereeseM, MS/MBA @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
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
Nicole P., RN PhDc @npiercePhDRN
@Colin_Hung Which meeting are you coming in for? Would love to meet up! #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…
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 fo…
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 wi…
Bingle @TheBingle
Yup! #hcldr
Nick Adkins @nickisnpdx
@AlzheimersLA this is a fun documentary from 2013: https://t.co/UUA1b9clLm #hcldr
Shannon Arturi @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
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
burtrosen @burtrosen
@researchmatters they are a business and deserve the $, but ugh #hcldr
Gregg Masters MPH @2healthguru
Two cool peeps! #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! ✈️ Health IT Dog! 🐕 Paw-pulation Health! @HealthITdog
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
Gregg Masters MPH @2healthguru
RT @DukePHC: T1Although I disagree with the selling of genetic information, I believe this information should be shared in order to help wi…
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…
David Goldsmith @dsgold
A1: I think this was a big missed opportunity for @23andMe to get out in front and say “the Terms of Service allow us to do this but we’d like you to opt-in to confirm you’re okay with us sharing your data with GSK. Click here to opt-in”. #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 @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: “Ident…
Carol Bush @TheSocialNurse
RT @nickisnpdx: @AlzheimersLA this is a fun documentary from 2013: https://t.co/UUA1b9clLm #hcldr
Nick van Terheyden, MD @drnic1
RT @PatientCritical: A1: The devil's in the fine print. As long as EULA's can be changed by the company at any time, #patientdata #digitalr
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 P., RN PhDc @npiercePhDRN
@GraceCordovano It makes the most sense - I feel people would be a lot more open to sharing their data this way if they were just informed and had say in the process. Also, we should engage the public - I hate doing research on people - we should do it with them and for them, as partners #hcldr
Nicole P., RN PhDc @npiercePhDRN
RT @GraceCordovano: T1) Tired of all the "hush, hush" underground de-identification practices. Come forward & partner directly with #patien
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? #hcl
Angela Hemans @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 tr…
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://…
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
Nick van Terheyden, MD @drnic1
RT @PatientCritical: A1: "simply removing a name, address & SSN from a... record (NO LONGER PROTECTS) anonymity...data-mining tools can (ID…
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 naturall…
Brent N. 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
Gregg Masters MPH @2healthguru
RT @PatientCritical: A1: The devil's in the fine print. As long as EULA's can be changed by the company at any time, #patientdata #digitalr
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.
Shannon Arturi @credcollab
@EMoriartyWade @hcldr @GSK @23andMe I think the patients should make something at least. #hcldr
Linda Stotsky @EMRAnswers
@RasuShrestha @23andMe I don’t think you were asked. Jayson also had DNA results from 23andMe- I think he was given the option to participate in 1-2 research studies, but never gave permission #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
Brian Ellerman @BrianLRMan
@Colin_Hung There's always a better. We spent months trying to perfect a universal informed consent only to have a better one come riding in. I see this situation as highly analogous. #hcldr
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 h…
Janet M. Kennedy @GetSocialHealth
Hey all! Janet Kennedy with the Get Social Health #podcast and @HMNwriters! Great to see you all. #HCLDR
ShereeseM, MS/MBA @ShereesePubHlth
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 g…
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
Colin Hung @Colin_Hung
RT @BrianLRMan: @Colin_Hung There's always a better. We spent months trying to perfect a universal informed consent only to have a better o…
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 #patien
Colin Hung @Colin_Hung
RT @jamesian: @ChronicallyJess @MichaelChaikof They can't. Who can wrap their head around revealing things that your children or grandchild…
ShereeseM, MS/MBA @ShereesePubHlth
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…
Colin Hung @Colin_Hung
RT @EMRAnswers: @RasuShrestha @23andMe I don’t think you were asked. Jayson also had DNA results from 23andMe- I think he was given the opt…
Gregg Masters MPH @2healthguru
Must see. Tweeted out many, many times. #hcldr
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 com…
Médecine Libre (Jérôme) @MedecineLibre
RT @PatientCritical: A1: "simply removing a name, address & SSN from a... record (NO LONGER PROTECTS) anonymity...data-mining tools can (ID…
Carol Bush @TheSocialNurse
@GetSocialHealth @HMNwriters Hey there @GetSocialHealth! Great to see you tonight! Yowza....I forgot how fast #HCLDR stream is!
Gregg Masters MPH @2healthguru
RT @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 th…
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
Nicole P., RN PhDc @npiercePhDRN
@SunnieSouthern Of course, it is harder to get people to agree to opt in vs. make the effort to opt out. We see this with organ donation - so I get why the push is for opt out. My question is how we can ensure people are informed adequately to make a consent choice #hcldr
Rasu Shrestha MD MBA @RasuShrestha
@GraceCordovano YES!!! Partner directly with patients! Be more open, and upfront. Ask! #hcldr
ShereeseM, MS/MBA @ShereesePubHlth
@ChronicallyJess @gmathews71 @hcldr Historically it has been reactive. It's seems to be the only way we know how to regulate. #hcldr
Linda Stotsky @EMRAnswers
@Colin_Hung @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth Hi Colin! That’s awesome! Waving to Kym & Ross! #hcldr
Bingle @TheBingle
Fascinating. #hcldr
Gregg Masters MPH @2healthguru
RT @dsgold: A1: I think this was a big missed opportunity for @23andMe to get out in front and say “the Terms of Service allow us to do thi…
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
Carol Bush @TheSocialNurse
RT @RasuShrestha: @GraceCordovano YES!!! Partner directly with patients! Be more open, and upfront. Ask! #hcldr
P. F. Anderson @pfanderson
RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcl
Colin Hung @Colin_Hung
RT @RasuShrestha: @GraceCordovano YES!!! Partner directly with patients! Be more open, and upfront. Ask! #hcldr
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
Angela Hemans @AngelaHemans
@johncloonan Hello John👋🏾! Did you get some of that down pour?? #HCLDR https://t.co/T5J3sYzD5b
Gregg Masters MPH @2healthguru
RT @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 muc…
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
Nick van Terheyden, MD @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
Virginia @PracticalHIT
RT @npiercePhDRN: @GraceCordovano It makes the most sense - I feel people would be a lot more open to sharing their data this way if they w…
Sarah Greene @researchmatters
@jhoronjeff are you with us on #hcldr tonight? @savvy_coop
Carol Bush @TheSocialNurse
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…
Médecine Libre (Jérôme) @MedecineLibre
RT @PatientCritical: A1: The devil's in the fine print. As long as EULA's can be changed by the company at any time, #patientdata #digitalr
JETS! ✈️ Health IT Dog! 🐕 Paw-pulation Health! @HealthITdog
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
Linda Stotsky @EMRAnswers
RT @MariahWrites: @dsgold @23andMe A lot of consumers just blindly accept #HealthTech legalese anyway. It's too complex for most of us pati…
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
Brian Ellerman @BrianLRMan
@endocrine_witch @Colin_Hung Yes, exactly (see my reply to @Colin_Hung ) Covance/LabCorp had a pretty sophisticated idea about how to biobank and then have pharma pay them to go sequencing for relevant markers. Challenge was consenting. #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 pati…
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
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
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
HCLDR Moderator @hcldr
An amazing T1 discussion. Let’s get ready for T2 in just 1 minute #hcldr
Sandra Woods, CIPP/C @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
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 @KenRayTaylor
T1 Yes, ONLY if it remains anonymous. I think it can be very helpful to identify and offer great information. #hcldr
Shannon Arturi @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
TrendWiki USA @TrendWikiUSA
***New Trend Alert*** 1. Ryan Zimmerman 2. Ander Herrera 3. Darmian 4. Rendon 5. Elk Grove Village 6. Kingery 7. #NeverDareMeTo 8. #hcldr
Jennifer @vitalfrequencis
RT @RasuShrestha: Should we all be asking: "Hey, is that my data you're selling?" Awesome and very current topic for tonight's #HCLDR chat…
ChronicallyJess @ChronicallyJess
@gmathews71 @hcldr 😂 your gif-use is gold. #hcldr
Nicole P., RN PhDc @npiercePhDRN
@researchmatters @AllofUsResearch @23andMe Such a great point! Doing research with the public instead of about them - changes the whole scenario #patientengagement #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…
Heather McCullen @H_SalemOaks
@jamesian @ChronicallyJess @MichaelChaikof I'm usually the paranoid one around here.. #hcldr
P. F. Anderson @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
iPain Living Magazine @iPainFoundation
RT @KenRayTaylor: T1 Yes, ONLY if it remains anonymous. I think it can be very helpful to identify and offer great information. #hcldr http…
Gregg Masters MPH @2healthguru
RT @jamesian: @ChronicallyJess @MichaelChaikof They can't. Who can wrap their head around revealing things that your children or grandchild…
Linda Stotsky @EMRAnswers
RT @drnic1: @AngelaHemans Agreed and the default should be out with a requirement to opt in for offering access But you still have to trus…
Colin Hung @Colin_Hung
RT @BrianLRMan: @endocrine_witch @Colin_Hung Yes, exactly (see my reply to @Colin_Hung ) Covance/LabCorp had a pretty sophisticated idea ab…
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
Lisa Fields @lisafieldsms
RT @dsgold: A1: I think this was a big missed opportunity for @23andMe to get out in front and say “the Terms of Service allow us to do thi…
Heather McCullen @H_SalemOaks
RT @npiercePhDRN: @researchmatters @AllofUsResearch @23andMe Such a great point! Doing research with the public instead of about them - cha…
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 enablin…
John Cloonan @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
Janet M. Kennedy @GetSocialHealth
Fine print is a b*tch. #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
Linda Stotsky @EMRAnswers
@Colin_Hung @kymlmartin @RossMartin @LGin412 @nickisnpdx @RasuShrestha @JoeBabaian @ShereesePubHlth @BoyleBJ No! You?!? ❤️😂 #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
Carol Bush @TheSocialNurse
@pfanderson @23andMe That's definitely a positive @pfanderson! #accessibility #HCLDR
Nick van Terheyden, MD @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 t…
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
Dennis Kenez @denniskenez
RT @GetSocialHealth: Fine print is a b*tch. #HCLDR
Nicole P., RN PhDc @npiercePhDRN
Cannot emphasize this enough - we must do research with our community, not about them. #patientengagement #hcldr
Angela Hemans @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 trus…
Pam Ressler @pamressler
The best medicine is listening to the patient #resilience #medx #hcldr https://t.co/fz2aPtNQsy
P. F. Anderson @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: in your doctor…
Gregg Masters MPH @2healthguru
Agree! @AllofUsResearch an @NIH initiative whereas @23andMe is a for profit venture. #hcldr
Nick van Terheyden, MD @drnic1
RT @jamesian: @ChronicallyJess @MichaelChaikof They can't. Who can wrap their head around revealing things that your children or grandchild…
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
Linda Stotsky @EMRAnswers
@RasuShrestha @ShereesePubHlth @GraceCordovano @TheBingle @Colin_Hung Hi Rasu! #hcldr We’ve missed you!
Carol Bush @TheSocialNurse
RT @pamressler: The best medicine is listening to the patient #resilience #medx #hcldr https://t.co/fz2aPtNQsy
Nick van Terheyden, MD @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
iPain Foundation @powerofpain
RT @KenRayTaylor: T1 Yes, ONLY if it remains anonymous. I think it can be very helpful to identify and offer great information. #hcldr http…
Natrice Rese 🇨🇦🎃 @NatriceR
RT @pamressler: The best medicine is listening to the patient #resilience #medx #hcldr https://t.co/fz2aPtNQsy
Heather McCullen @H_SalemOaks
T2: Absolutely. I am 100% against sharing someones genetic data (or other medical data for that matter) without consent. #hcldr
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
gmathews71 @gmathews71
$^%*&^(*&^) legalese.... #hcldr
Linda Stotsky @EMRAnswers
RT @hcldr: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor…
Nicole P., RN PhDc @npiercePhDRN
@Colin_Hung I would love to be a part of it! Let me know! #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 4…
David Goldsmith @dsgold
A2: Oh hell yes! #hcldr
Mariah Obiedzinski @MariahWrites
RT @hcldr: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor…
Jodi Dragon @JodiOrvisDragon
RT @KenRayTaylor: T1 Yes, ONLY if it remains anonymous. I think it can be very helpful to identify and offer great information. #hcldr http…
Colin Hung @Colin_Hung
RT @PatientCritical: A2: (1/2) Peter Pitts, Center for Medicine in the Public Interest: "people mostly volunteered this data for “higher go…
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
ShereeseM, MS/MBA @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
Nick van Terheyden, MD @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 cent…
Gregg Masters MPH @2healthguru
RT @subatomicdoc: @ColtonOrtolf @lauradianeappel @23andMe They still don't, and the business model is selling information on slick marketin…
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 @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
Liam Farrell @drlfarrell
Hi from Ireland; sorry I'm late, Lurking/learning mostly tonight #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 *\O/* @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
gmathews71 @gmathews71
RT @PatientCritical: A1: That's the shell game: as long as there's 'wiggle room' in the legalese, #patientdata rights are...well...easily w…
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 (#MillionVeteransProjec
Colin Hung @Colin_Hung
@BrianLRMan @hcldr Totally agree with you Brian. Enough material here for 2 or 3 chats on this topic. #hcldr
Colton Ortolf @ColtonOrtolf
T2: By building medical records centered around the Provider practice and not the patient, we implicitly made this decision ten years ago. As a result, individuals do not own their data - providers do; and that leads to our inability to use it effectively elsewhere #hcldr
JETS! ✈️ Health IT Dog! 🐕 Paw-pulation Health! @HealthITdog
Hmm. I wonder if my vet's EHR is participating in a similar transaction... #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…
Ken Taylor @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
@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: in your doctor…
Sandra Woods, CIPP/C @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
P. F. Anderson @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
P. F. Anderson @pfanderson
RT @PatientCritical: A1: "simply removing a name, address & SSN from a... record (NO LONGER PROTECTS) anonymity...data-mining tools can (ID…
Virginia @PracticalHIT
@hcldr #t2 #hcldr of course but if the data is protected and deidentified...
Nick van Terheyden, MD @drnic1
RT @hcldr: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor…
Nick van Terheyden, MD @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
P. F. Anderson @pfanderson
RT @RasuShrestha: Should we all be asking: "Hey, is that my data you're selling?" Awesome and very current topic for tonight's #HCLDR chat…
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
Carol Bush @TheSocialNurse
A2 Oh HECK YEAH....consent is required by law. #hcldr
Erin Moriarty Wade @EMoriartyWade
RT @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 th…
Brent N. 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 M. 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
ShereeseM, MS/MBA @ShereesePubHlth
@AlzheimersLA And we all know, the definition of "affirmed" & "informed" get fuzzy depending who's checking #hcldr
Angela Hemans @AngelaHemans
@drnic1 This entire situation is really no different from FB/Cambridge Analytica. 23andme has already added a level of mistrust to start. #hcldr
gmathews71 @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…
Brian Ellerman @BrianLRMan
T2: To the extent that the originating owner of the data is informed and compensated fairly. If I found my photo being used to sell products without permission, I’d be fully within my rights to shut it down and demand compensation. Company could choose to pay me or stop. #hcldr
Nick van Terheyden, MD @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
P. F. Anderson @pfanderson
RT @SandraWoodsMtl: #hcldr T1 If people are to consent to sale of their genetic data, counseling on potential risks should be provided - fr…
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…
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/…
Angela Hemans @AngelaHemans
RT @hcldr: T2 Does it matter if someone voluntarily gives their information to a company (ie: 23andMe) vs involuntarily (ie: in your doctor…
P. F. Anderson @pfanderson
RT @PatientCritical: A2: (2/2) There is no difference betwn voluntary & involuntary use of data w/o #informedconsent. “A lot of people paid…
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
gmathews71 @gmathews71
RT @researchmatters: Yes--have been following and seeing how it is all unfurling. This has been tried so many times (#MillionVeteransProjec
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: in your doctor…
Erin Moriarty Wade @EMoriartyWade
RT @MariahWrites: T2: I'm baffled by this. In #healthcare #contentmarketing, we can't even market in certain capacities to patients by cond…
Linda Stotsky @EMRAnswers
T2: Claims based data has been sold for years, so odds are your data may have been shared involuntarily. This type of data stoked early #HIE’s as well-IMHO ANY data sharing requires trust & authentication - #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
David Goldsmith @dsgold
A2: I encourage folks to check out Our Bodies, Our Data by Adam Tanner. It’s staggering how much data we’re giving away involuntarily and who’s buying that data. #hcldr
Gregg Masters MPH @2healthguru
T2 again, it’s all about the disclosure up front. Though the default as previously noted by another tweepl need be opt in vs an all in or silence is acceptance scheme. #HCLDR
iPain Living Magazine @iPainFoundation
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 th…
Colton Ortolf @ColtonOrtolf
T2: NYtimes did a really great article on this topic for those interested: https://t.co/OJ8risfR2h #hcldr
gmathews71 @gmathews71
T2: Absolutely it does!! The data I generate SHOULD belong to me – yet every other stakeholder has laid claim to owning and monetizing it, while keeping the transactions hidden. If people are using my data exhaust as well as my PHI, they should get permission for it… #HCLDR
Nick Adkins @nickisnpdx
RT @ChronicallyJess: @EMoriartyWade @hcldr @GSK @23andMe SAY IT AGAIN FOR THE PEOPLE IN THE BACK! Patient compensation for contributions t…
Barby Ingle *\O/* @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 th…
Carol Bush @TheSocialNurse
RT @ColtonOrtolf: T2: NYtimes did a really great article on this topic for those interested: https://t.co/OJ8risfR2h #hcldr
Ken Taylor @KenRayTaylor
RT @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 las…
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
iPain Foundation @powerofpain
RT @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 las…
iPain Living Magazine @iPainFoundation
RT @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 las…
Nicole P., RN PhDc @npiercePhDRN
T2 - Selling data without permission does not feel appropriate. As a researcher embedded in a hospital, I do use patient data that was de-identified - but I do not sell it, nor do I profit from it. #hcldr
Barby Ingle *\O/* @BarbyIngle
RT @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 las…
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 @AngelaHemans
RT @GraceCordovano: T2) Majority of people do NOT know their personal health information is de-identified & sold. This is a shortcoming of…
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
Giglet @CluckMort
RT @hcldr: T1 Are you comfortable with 23andMe selling de-identified genetic information to GSK for research purposes? Why or why not? #hcl
Nick van Terheyden, MD @drnic1
@drlfarrell If I’d known I’d have picked an Irish #whiskey I honor #hcldr
Gregg Masters MPH @2healthguru
RT @npiercePhDRN: Cannot emphasize this enough - we must do research with our community, not about them. #patientengagement #hcldr https://…
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
Linda Stotsky @EMRAnswers
@burtrosen @RasuShrestha @ShereesePubHlth @GraceCordovano @TheBingle @Colin_Hung Hi Burt! How’s the week going? #hcldr
Mariah Obiedzinski @MariahWrites
RT @gmathews71: T2: Absolutely it does!! The data I generate SHOULD belong to me – yet every other stakeholder has laid claim to owning an…
ChronicallyJess @ChronicallyJess
RT @SunnieSouthern: T2: Copy rights protect our ideas, words, images, graphics, artwork etc. even without filing any paperwork. We should…
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: YES! Trust is the most expensive commodity. Tread carefully. I believe that increasingly, esp in this age of #AI
Giglet @CluckMort
RT @gmathews71: @hcldr T1: No, I’m not comfortable with it – re-identification techniques these days are more robust than ever, and many of…
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
Colin Hung @Colin_Hung
RT @BrianLRMan: T2: To the extent that the originating owner of the data is informed and compensated fairly. If I found my photo being used…
Mariah Obiedzinski @MariahWrites
RT @ColtonOrtolf: T2: NYtimes did a really great article on this topic for those interested: https://t.co/OJ8risfR2h #hcldr
Angela Hemans @AngelaHemans
RT @MariahWrites: T2: I'm baffled by this. In #healthcare #contentmarketing, we can't even market in certain capacities to patients by cond…
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/…
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
P. F. Anderson @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
David Goldsmith @dsgold
@ChronicallyJess @nickisnpdx @EMoriartyWade @hcldr @GSK @23andMe Agreed, but I think most of us would agree compensation is lacking for patient contributions to health care innovation broadly. #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: in y…
Angela Hemans @AngelaHemans
RT @DukePHC: T2 It makes a big difference whether or not the patient chose to disclose their information. Genetic information is biological…
ChronicallyJess @ChronicallyJess
RT @dsgold: A2: I encourage folks to check out Our Bodies, Our Data by Adam Tanner. It’s staggering how much data we’re giving away involun…
Alzheimer's Los Angeles @AlzheimersLA
RT @ShereesePubHlth: @AlzheimersLA And we all know, the definition of "affirmed" & "informed" get fuzzy depending who's checking #hcldr
iPain Foundation @powerofpain
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 th…
Mariah Obiedzinski @MariahWrites
Excellent point. #hcldr
Ali @Ali_HHNYC
RT @RasuShrestha: T2: YES! Trust is the most expensive commodity. Tread carefully. I believe that increasingly, esp in this age of #AI
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
Nicole P., RN PhDc @npiercePhDRN
T2 - this topic is bringing Henrietta Lacks to mind - we must find a way to compensate those who contribute to scientific breakthroughs if we are going to profit from them financially #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!
Nick van Terheyden, MD @drnic1
RT @2healthguru: T2 again, it’s all about the disclosure up front. Though the default as previously noted by another tweepl need be opt in…
P. F. Anderson @pfanderson
RT @ShereesePubHlth: @credcollabgroup I really think, @23andMe has the right scope & good intentions. To that I say, "Take my data, have at…
Sarah Greene @researchmatters
x1000 #hcldr
gmathews71 @gmathews71
T2(cont.) and yet every incumbent stakeholder has an argument (and legal) backing why they, not the person who orginates the data, can and should own YOUR data. #hcldr #therewillbeblood https://t.co/YsiZi0riU1
Colin Hung @Colin_Hung
T2 Totally with you on this @brentnreed !!! #hcldr
John Cloonan @johncloonan
RT @AlzheimersLA: Thinking about Henrietta Lacks. The conversation about informed consent + making money off of someone's biodata from whi…
Brent N. 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 @mloxton
Lurking on #hcldr
Mariah Obiedzinski @MariahWrites
RT @RasuShrestha: T2: YES! Trust is the most expensive commodity. Tread carefully. I believe that increasingly, esp in this age of #AI
Colin Hung @Colin_Hung
RT @dsgold: @ChronicallyJess @nickisnpdx @EMoriartyWade @hcldr @GSK @23andMe Agreed, but I think most of us would agree compensation is lac…
Nick Adkins @nickisnpdx
RT @RasuShrestha: T2: YES! Trust is the most expensive commodity. Tread carefully. I believe that increasingly, esp in this age of #AI
David Goldsmith @dsgold
@GraceCordovano @Colin_Hung @pfanderson @anthonynotleon @hcldr Agreed. We need to get @chrissyfarr on the case. She’ll dig it up! #hcldr
Mariah Obiedzinski @MariahWrites
RT @npiercePhDRN: T2 - Selling data without permission does not feel appropriate. As a researcher embedded in a hospital, I do use patient…
Brent N. 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
Nick van Terheyden, MD @drnic1
RT @SunnieSouthern: T2: Copy rights protect our ideas, words, images, graphics, artwork etc. even without filing any paperwork. We should…
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, p…
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…
Bingle @TheBingle
@Colin_Hung @anthonynotleon @hcldr @23andMe Fascinating. Probably many could go crazy if they knew how much is "out there". #hcldr
Brian Ellerman @BrianLRMan
@hcldr T2: Here's the problem: who has full provenance of data? Not 23&Me, not my doc, certainly not me. So yes it matters, but involuntary sale of data is nearly a given the moment it's created. This is why blockchain-type approach is needed to audit/verify access. #hcldr
Mariah Obiedzinski @MariahWrites
RT @Colin_Hung: T2 Totally with you on this @brentnreed !!! #hcldr https://t.co/5Es0AgavV9
P. F. Anderson @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
Shannon Arturi @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
Nick Adkins @nickisnpdx
RT @gmathews71: T2: Absolutely it does!! The data I generate SHOULD belong to me – yet every other stakeholder has laid claim to owning an…
The Roctor,MD @TheRoctor_MD
@EMoriartyWade @hcldr @GSK @23andMe And, the money will taint their stewardship of your information. #hcldr
P. F. Anderson @pfanderson
RT @researchmatters: Yes--have been following and seeing how it is all unfurling. This has been tried so many times (#MillionVeteransProjec
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, p…
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
Dennis Kenez @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…
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
ShereeseM, MS/MBA @ShereesePubHlth
@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
Kate Warnock @mkatewarnock
T2 Great point - others profiting from personal data is esp egregious when patients themselves can't access it. #hcldr
gmathews71 @gmathews71
@pfanderson @PatientCritical @drugwonks I am becoming skeptical of any profit driven org - while good intentions are in place, the sole fiscal responsibility of any company is to increase profits and EPS for shareholders - hard to quantify "doing good" on a 10K..and it erodes the mission to help people over time #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 o…
Nick van Terheyden, MD @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 diffe…
Sarah Greene @researchmatters
RT @BrianLRMan: @hcldr T2: Here's the problem: who has full provenance of data? Not 23&Me, not my doc, certainly not me. So yes it matters,…
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: in y…
Nicole P., RN PhDc @npiercePhDRN
This is what I keep thinking back to - and how companies made huge profits, and her family suffered... We cannot allow the potential for scientific breakthroughs erode our moral compass #hcldr
Colin Hung @Colin_Hung
RT @GraceCordovano: @gmathews71 We need to have the choice to: 👉grant access & be compensated for said access 👉decline access 👉donate acces…
Mariah Obiedzinski @MariahWrites
RT @GraceCordovano: @gmathews71 We need to have the choice to: 👉grant access & be compensated for said access 👉decline access 👉donate acces…
Shannon Arturi @credcollab
I agree. WAY WORSE! @EMoriartyWade #hcldr
Angela Hemans @AngelaHemans
@anthonynotleon @EMoriartyWade Unless it is clearly disclosed like they do with all The hipaa paperwork, IMO it’s still wrong and misleading. #hcldr
Linda Stotsky @EMRAnswers
T2: One of the reasons many patients never shared #mentalhealth issues w/ providers was out of fear this information would cross over to employer or insurance databases. The percentages were quite high. I hope we aren’t heading into further distrust. #hcldr
David Goldsmith @dsgold
In case you’re interested, here’s a link to Adam Tanner’s exceptional book on this topic https://t.co/hy79rjsd6M #hcldr
Sandra Woods, CIPP/C @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
P. F. Anderson @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 acces…
Colin Hung @Colin_Hung
RT @credcollabgroup: T2: Yes it absolutely matters! But unfortunately I am not sure if we can control that. I think the attempt should be m…
Colin Hung @Colin_Hung
RT @BrianLRMan: @hcldr T2: Here's the problem: who has full provenance of data? Not 23&Me, not my doc, certainly not me. So yes it matters,…
Sarah Greene @researchmatters
@pfanderson @PatientCritical @drugwonks Thanks for sharing this incredible resource! can't wait to check it out #hcldr
ShereeseM, MS/MBA @ShereesePubHlth
Good question. Has this even been a consideration? Are HIE's mininig/selling that info? #hcldr
Nicole P., RN PhDc @npiercePhDRN
RT @dsgold: @ChronicallyJess @nickisnpdx @EMoriartyWade @hcldr @GSK @23andMe Agreed, but I think most of us would agree compensation is lac…
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
Linda Stotsky @EMRAnswers
@burtrosen @RasuShrestha @ShereesePubHlth @GraceCordovano @TheBingle @Colin_Hung Yes!! #hcldr
Bingle @TheBingle
@npiercePhDRN T2 There's irony or comedy somewhere with a researcher embedded in a hospital! #hcldr
Sunnie Southern @SunnieSouthern
RT @dsgold: @GraceCordovano @Colin_Hung @pfanderson @anthonynotleon @hcldr Agreed. We need to get @chrissyfarr on the case. She’ll dig it u…
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.…
gmathews71 @gmathews71
@TheBingle @hcldr Not even unethical folks - there is an intellectual arrogance that its too complicated to explain consent to folks, or worse, we should do it because we know best/its for their own good. Lots of built in fear to keep the machine going... #hcldr
Shannon Arturi @credcollab
@PatientCritical Such a great point. But is that really working? #hcldr
Linda Stotsky @EMRAnswers
RT @Jim_TheRocktor: @EMoriartyWade @hcldr @GSK @23andMe And, the money will taint their stewardship of your information. #hcldr
R.Grossmann,MD, FACS @ZGJR
RT @RasuShrestha: T2: YES! Trust is the most expensive commodity. Tread carefully. I believe that increasingly, esp in this age of #AI
Sandra Woods, CIPP/C @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
ShereeseM, MS/MBA @ShereesePubHlth
@H_SalemOaks @credcollabgroup @23andMe That's also true #hcldr
Liam Farrell @drlfarrell
RT @SandraWoodsMtl: #hcldr T2 Main differntiator for me is genetic vs non-genetic data. Nothing but genetic data has potential repercussion…
David Goldsmith @dsgold
@EMoriartyWade Good chance that all your pharmacy data is also being sold. #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
Nicole P., RN PhDc @npiercePhDRN
@TheBingle You aren't wrong, haha. I'm a nurse scientist - every day is an adventure! #hcldr
Gregg Masters MPH @2healthguru
T1 I penned this post in 2009: https://t.co/kEXzOebGh0 #hcldr > Not much progress since! https://t.co/Qv8h8ECoZx
Mariah Obiedzinski @MariahWrites
RT @gmathews71: @TheBingle @hcldr Not even unethical folks - there is an intellectual arrogance that its too complicated to explain consent…
gmathews71 @gmathews71
@ShereesePubHlth Short answer is yes - many are trying to embed analytics into the EHR - and move to the cloud so they can access the data with skunkworks teams and build new analytics products...with our data.... #hcldr
P. F. Anderson @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
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
Shannon Arturi @credcollab
@ShereesePubHlth Scary to think about that. #hcldr
Kimberly George @kimberlyanngeo
RT @researchmatters: Yes--have been following and seeing how it is all unfurling. This has been tried so many times (#MillionVeteransProjec
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…
JETS! ✈️ Health IT Dog! 🐕 Paw-pulation Health! @HealthITdog
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
gmathews71 @gmathews71
RT @mkatewarnock: +1. Particularly in the world we live in today. #hcldr https://t.co/utfZ5aMrPC
Linda Stotsky @EMRAnswers
RT @SandraWoodsMtl: #hcldr T2 Main differntiator for me is genetic vs non-genetic data. Nothing but genetic data has potential repercussion…
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
TrendWiki New Zealand @TrendWikiNZ
***New Trend Alert*** 1. Mets 2. Samoa Joe 3. Ian Heinisch 4. Benzema 5. David Freese 6. Darmian 7. Jeff Hardy 8. Clarke 9. Bellamy 10. #hcldr 11. #GoldenBuzzer 12. #WNBALive 13. #SuperCats 14. #EelFire
Colin Hung @Colin_Hung
RT @RasuShrestha: Remembering my friend @MightyCasey as we discuss this important topic on #HCLDR tonight. Read this important blog if yo…
Janet M. 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…
HCLDR Moderator @hcldr
Really interesting tweets on #hcldr right now. Let’s get ready for T3 in just 1 minute!
Linda Stotsky @EMRAnswers
RT @RasuShrestha: Remembering my friend @MightyCasey as we discuss this important topic on #HCLDR tonight. Read this important blog if yo…
Mariah Obiedzinski @MariahWrites
RT @GraceCordovano: T2) As we continue to try empower patients & encourage them to engage in their care, utilize new technologies & tools,…
gmathews71 @gmathews71
@WesleyWilson I'm supposed to be talking to our folks there about it - if you have any info or references, I'd appreciate it! #hcldr
Nick van Terheyden, MD @drnic1
RT @RasuShrestha: Remembering my friend @MightyCasey as we discuss this important topic on #HCLDR tonight. Read this important blog if yo…
Gregg Masters MPH @2healthguru
RT @SueWoods: @researchmatters Big difference using data like #MillionVeteransProject, working hard to get a representative #VA volunteer p…
Larry Gioia 🔠✨ @LGin412
@hcldr Ready player one! #hcldr
The Roctor,MD @TheRoctor_MD
@ShereesePubHlth EHR data is diff tho than DNA data. #hcldr
Colin Hung @Colin_Hung
RT @gmathews71: @ShereesePubHlth Short answer is yes - many are trying to embed analytics into the EHR - and move to the cloud so they can…
Shannon Arturi @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 yo…
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
P. F. Anderson @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! ✈️ Health IT Dog! 🐕 Paw-pulation Health! @HealthITdog
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
gmathews71 @gmathews71
@dsgold @EMoriartyWade @IQVIA_global @LexisNexis would agree...#my31 #hcldr
Nick van Terheyden, MD @drnic1
RT @WesleyWilson: has anyone been following the new digital health stuff in Australia? removes a lot of silos for #healthcare and #pts BUT…
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
Linda Stotsky @EMRAnswers
RT @2healthguru: T1 I penned this post in 2009: https://t.co/kEXzOebGh0 #hcldr > Not much progress since! https://t.co/Qv8h8ECoZx
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
ShereeseM, MS/MBA @ShereesePubHlth
@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
Jamie Roger @JamieRoger8
Sorry I'm late tonight, looks like a pretty good conversation so far! Jamie from CT here #hcldr
Brian Ellerman @BrianLRMan
@GraceCordovano @Colin_Hung @hcldr We need to move this along, my beer's running out. 😎 #hcldr 🥛
Shannon Arturi @credcollab
@MariahWrites @GraceCordovano @gmathews71 @S4PM Yes but the key word is CHOICE for sure! #hcldr
Brent N. 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
gmathews71 @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
Gregg Masters MPH @2healthguru
RT @GraceCordovano: T2) As we continue to try empower patients & encourage them to engage in their care, utilize new technologies & tools,…
Barby Ingle *\O/* @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
Nick Adkins @nickisnpdx
RT @RasuShrestha: Remembering my friend @MightyCasey as we discuss this important topic on #HCLDR tonight. Read this important blog if yo…
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
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
Linda Stotsky @EMRAnswers
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…
Nick van Terheyden, MD @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
P. F. Anderson @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
Erin Moriarty Wade @EMoriartyWade
@mloxton Glad to see you @mloxton ! #hcldr
Rasu Shrestha MD MBA @RasuShrestha
RT @npiercePhDRN: This is what I keep thinking back to - and how companies made huge profits, and her family suffered... We cannot allow th…
Nick van Terheyden, MD @drnic1
Wow that’s another sad crushing indictment of lack of progress #Hcldr
Angela Hemans @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…
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
Nicole P., RN PhDc @npiercePhDRN
@Colin_Hung @MariahWrites @GraceCordovano @gmathews71 @S4PM There is still a lot of fear regarding genetic data and what can be done with it - can people be fired, or denied insurance, or be discriminated against in other ways? When there is a lack of knowledge, there is fear - so we must address that knowledge gap to help #hcldr
Sunnie Southern @SunnieSouthern
RT @Colin_Hung: @MariahWrites @GraceCordovano @gmathews71 @S4PM T2 That's where I think 23andMe underestimated customers and overestimated…
Ken Taylor @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 M. 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
ShereeseM, MS/MBA @ShereesePubHlth
@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
Nicole P., RN PhDc @npiercePhDRN
RT @gmathews71: @TheBingle @hcldr Not even unethical folks - there is an intellectual arrogance that its too complicated to explain consent…
gmathews71 @gmathews71
@HealthITdog ...I've heard that there are errors with this thinking - but what other alternatives are there? Is there anything that could be used as a legal precedent? #hcldr
Sunnie Southern @SunnieSouthern
RT @RasuShrestha: Remembering my friend @MightyCasey as we discuss this important topic on #HCLDR tonight. Read this important blog if yo…
Richie Etwaru | #My31 @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://…
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
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
Bingle @TheBingle
@EMRAnswers T2 REMEMBER... There are people who work with patients data ... They can be gossips! #hcldr
Nicole P., RN PhDc @npiercePhDRN
RT @brentnreed: Similar to an IRB application, where you have to justify the benefits of the research. If you can't benefit the participant…
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
Brian Ellerman @BrianLRMan
T3: Step 1 – permission, Step 2 – revenue sharing. In what world is a producer not paid for the good it produces, least of all a good then being packaged and sold by another? Now, valuation is something else entirely. #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 hea…
iPain Living Magazine @iPainFoundation
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…
Linda Stotsky @EMRAnswers
T3: I believe we will see various “business models” evolve from this debate. I can see it go both ways, depending on the use case. #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
Erin Moriarty Wade @EMoriartyWade
RT @dsgold: @GraceCordovano @Colin_Hung @pfanderson @anthonynotleon @hcldr Agreed. We need to get @chrissyfarr on the case. She’ll dig it u…
iPain Foundation @powerofpain
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…
P. F. Anderson @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 @BrianLRMan: T3: Step 1 – permission, Step 2 – revenue sharing. In what world is a producer not paid for the good it produces, least of…
Liam Farrell @drlfarrell
RT @EMRAnswers: T3: I believe we will see various “business models” evolve from this debate. I can see it go both ways, depending on the us…
Colin Hung @Colin_Hung
RT @EMRAnswers: T3: I believe we will see various “business models” evolve from this debate. I can see it go both ways, depending on the us…
Matthew Katz, MD @subatomicdoc
RT @GraceCordovano: @brentnreed This doesn't contribute to a common good either: data is skewed to represent only those who could afford th…
Colin Hung @Colin_Hung
RT @SunnieSouthern: @Colin_Hung @MariahWrites @GraceCordovano @gmathews71 @S4PM T2 Colin, once again I 100% agree! Tranparent informed cons…
Dennis Kenez @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
iPain Foundation @powerofpain
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…
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 wha…
David Goldsmith @dsgold
@Colin_Hung @gmathews71 @EMoriartyWade @IQVIA_global @LexisNexis Fair point, Colin, but it’s also the case that the system is rigged in favor of multi-billion dollar companies who are profiting handsomely off our data. It needs to be transparent and equitable going forward. #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 @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…
Erin Moriarty Wade @EMoriartyWade
RT @2healthguru: T1 I penned this post in 2009: https://t.co/kEXzOebGh0 #hcldr > Not much progress since! https://t.co/Qv8h8ECoZx
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
P. F. Anderson @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://…
Sandra Woods, CIPP/C @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
P. F. Anderson @pfanderson
RT @credcollabgroup: T2: Yes it absolutely matters! But unfortunately I am not sure if we can control that. I think the attempt should be m…
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 cent…
Nicole P., RN PhDc @npiercePhDRN
T3 - it really depends. Asking for consent to sell data is only valid if consent is truly informed. Would they inform the patient about each study, or just the vast possibilities? In any case, the research needs to give back to the subjects - financially or otherwise #hcldr
fredtrotter @fredtrotter
RT @anthonynotleon: @EMoriartyWade How do you feel about the EHR, other HIT vendors, or the participating HIE selling off the information i…
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
Josephine Borrillo @70mq
so bummed I have to leave, will catch the transcript #hcldr such a great topic
fredtrotter @fredtrotter
RT @AngelaHemans: @anthonynotleon @EMoriartyWade Unless it is clearly disclosed like they do with all The hipaa paperwork, IMO it’s still w…
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 wha…
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
Colton Ortolf @ColtonOrtolf
T3: Because data is not patient-centric today, the only viable option is provide a service at an incredibly low margin with the assumption that you will be able to profit from some users' data. Otherwise we would all pay a lot more for these services #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
P. F. Anderson @pfanderson
RT @GraceCordovano: @SunnieSouthern @dsgold I worked with #HeLa cells in grad school & read her story. It should have been required reading…
iPain Living Magazine @iPainFoundation
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…
Nick van Terheyden, MD @drnic1
@BrianLRMan @GraceCordovano @Colin_Hung @hcldr You need something stronger #hcldr https://t.co/SHU4ZvgWN9
Linda Stotsky @EMRAnswers
RT @nickisnpdx: T3 hat tip @sam_debrouwer & @walterdebrouwer https://t.co/yyG7Y9PaAP (definitely watch the video) for giving everyone the o…
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: I believe we will see various “business models” evolve from this debate. I can see it go both ways, depending on the us…
gmathews71 @gmathews71
YES!! #hcldr
JETS! ✈️ Health IT Dog! 🐕 Paw-pulation Health! @HealthITdog
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 N. 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
P. F. Anderson @pfanderson
RT @dsgold: @Colin_Hung @gmathews71 @EMoriartyWade @IQVIA_global @LexisNexis Fair point, Colin, but it’s also the case that the system is r…
Larry Gioia 🔠✨ @LGin412
@KenRayTaylor Check my last tweet on this 🎯 #hcldr
Elissa Hall @erhall1
RT @Ron_George: Utilising #socialmedia to educate and inform #healthcare professionals, policy-makers and the broader community in evidence…
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
ShereeseM, MS/MBA @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
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
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…
Gregg Masters MPH @2healthguru
Yup! Few know her ‘Hela Cells’ story: https://t.co/lMAeH7SPu0 #hcldr
gmathews71 @gmathews71
T3: Yes and no – while getting consent is good, there are parts that would make sense to know – who is buying it, how much are they paying (and how often), and what are they using it for? Many are happy to donate to help others - few would if they knew it would hurt them #HCLDR
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
P. F. Anderson @pfanderson
@dsgold @Colin_Hung @gmathews71 @EMoriartyWade @IQVIA_global @LexisNexis Hallelujah! Transparency is the big part of that, IMHO. #hcldr