#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
| Patient Chat @patientchat The Empowered #patientchat is a project of @power4patients |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Chat @patientchat Hi #patientchat’ers. I’m Kara from @power4patients and I’ll be moderating today’s chat |
 | Christina Lizaso @btrfly12 RT @patientchat: You can find the topics we'll cover on today’s Empowered #patientchat here: You can find the topics we'll cover on today’s Empowered #patientchat here: https://t.co/wuMAJykXqj |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Carly Flumer (she/her) @carlyflumer @patientchat @power4patients Hi Kara!! It’s great to hear from you! Happy New Year! #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Hello, humans! Casey Quinlan aka Mighty Casey here, loudmouthed #datarights #citizenscience #epatient activist w/interests in health/science literacy, unlocking access to healthcare for all, and cost/price transparency. HAPPY FRIDAY. #patientchat |
 | Alan Brewington @abrewi3010 Alan here. Once again balancing the work life with the chronic life. Anyone know how I can take a leave of absence from both lives?? #patientchat |
| Patient Chat @patientchat @carlyflumer @power4patients Happy New Year to you Carly! #patientchat |
| Patient Chat @patientchat Today's chat is solely informational & not a substitute for speaking w/ a doctor who's familiar w/your medical needs & history. #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette & Guidelines, along with past chat transcripts, at https://t.co/mKfy3dIc2W #patientchat |
 | Seth Rotberg @Srotberg15 Hi everyone! Like many, I wear multiple hats as a patient advocate. I’m checking in today as Patient Engagement Manager at @teaminspire #patientchat |
| Carly Flumer (she/her) @carlyflumer I’m Carly! To share a little bit about me: yesterday was the 3rd anniversary of my #cancer diagnosis. I’m *here* now looking to make a difference for others in the oncology world. :) #patientchat |
 | Marcela Musgrove @marcela Hi--I'm Marcela joining from NC #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Patient Access: Let’s Talk Health Data https://t.co/wuMAJykXqj |
| Carly Flumer (she/her) @carlyflumer @Srotberg15 @teaminspire #tribelife #patientchat |
 | Vera Rulon FAHIMA @vrulon Hello All! Vera here fro NY. I'll be in and out of this chat today!!! Client work needs to be done! Looking forward participating... #patientchat |
| Seth Rotberg @Srotberg15 @carlyflumer Continue to make a difference in the lives of others! #patientchat |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Pls include corresponding T# at front of answer - hard to remember but helpful #patientchat |
 | Ody @OdyO11 Hi, I'm a patient with several rarely diagnosed disorders, living in Europe. I can't join the full patient chat today, but I'll try to post some replies, maybe in advance. #patientchat |
 | Dave deBronkart @ePatientDave @patientchat LOL no Twitter chat could be a substitute for talking with MY doctor ... you should SEE the things he knows that Twitter doesn't :-) #patientchat |
 | AllStripes @_allstripes Hi there! We’re RDMD- an online platform for #raredisease patients to store all their medical history in one place while also submitting anonymized information to researchers to make it it easy for patients and families to contribute to drug research from home. #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1... #patientchat |
| Patient Chat @patientchat T1: What’s the first step in getting and controlling your health data? #patientchat https://t.co/V6wiKEoNbk |
| AllStripes @_allstripes RT @patientchat: Today's #patientchat topic is Patient Access: Today's #patientchat topic is Patient Access: Let’s Talk Health Data https://t.co/wuMAJykXqj |
| Seth Rotberg @Srotberg15 RT @patientchat: T1: T1: What’s the first step in getting and controlling your health data? #patientchat https://t.co/V6wiKEoNbk |
 | Beverly A. Zavaleta MD @BZavaletaMD RT @carlyflumer: I’m Carly! To share a little bit about me: I’m Carly! To share a little bit about me: yesterday was the 3rd anniversary of my #cancer diagnosis. I’m *here* now looking to make a difference for others in the oncology world. :) #patientchat |
| Ody @OdyO11 @patientchat T1: Not having your autonomy impaired. Being seen as the rightful owner of your health data and as subject, not as object. Being taken seriously. #patientchat |
| Alan Brewington @abrewi3010 A1 raising your own health literacy. Not only will this get you the data you desire, it helps you ask better questions to a system designed to say no. #patientchat |
| Vera Rulon FAHIMA @vrulon T1: Access to your personal health data. Unfortunately, it's not that easy. Lots of obstacles. #patientchat |
 | Patient Empowerment Network @power4patients RT @patientchat: T1: T1: What’s the first step in getting and controlling your health data? #patientchat https://t.co/V6wiKEoNbk |
 | Kathleen Maxian @KathleenMaxian T1: Helping patients understand that in this day and age their health data matters! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: Getting your data? Ask for it! It's your right under #hipaa https://t.co/GboaXjsXcV Controlling your data? That's a crapshoot, still, given #hipaa BAA (Biz Associate Agreements) which are a total can of worms. IOW, your data could spray ... anywhere. #patientchat |
| AllStripes @_allstripes T1: 1/2 Getting access to all your records. We talk to so many patients and caregivers who tell us RDMD was able to collect records they’ve never seen before from their doctors. #patientchat |
| Seth Rotberg @Srotberg15 @KathleenMaxian Yes! That’s very important to understand the ins and outs and how each of us are a piece of the bigger puzzle. #patientchat |
| AllStripes @_allstripes T1: 2/2 Whether through a free service like ours or on your own, requesting your complete files from all your doctors and hospitals is the first step! #patientchat |
| Alan Brewington @abrewi3010 RT @MightyCasey: A1: A1: Getting your data? Ask for it! It's your right under #hipaa https://t.co/GboaXjsXcV Controlling your data? That's a crapshoot, still, given #hipaa BAA (Biz Associate Agreements) which are a total can of worms. IOW, your data could spray ... anywhere. #patientchat |
| Vera Rulon FAHIMA @vrulon @MightyCasey Agree. Many people don't understand their rights. #patientchat |
| Carly Flumer (she/her) @carlyflumer T1: I would say controlling your health data means signing up for patient portals & marking sure all info is correct. Also, sometimes full records are uploaded. Keep a paper trail just in case! #patientchat |
| Vera Rulon FAHIMA @vrulon RT @MightyCasey: A1: A1: Getting your data? Ask for it! It's your right under #hipaa https://t.co/GboaXjsXcV Controlling your data? That's a crapshoot, still, given #hipaa BAA (Biz Associate Agreements) which are a total can of worms. IOW, your data could spray ... anywhere. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @rdmd: T1: T1: 1/2 Getting access to all your records. We talk to so many patients and caregivers who tell us RDMD was able to collect records they’ve never seen before from their doctors. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @rdmd: T1: T1: 2/2 Whether through a free service like ours or on your own, requesting your complete files from all your doctors and hospitals is the first step! #patientchat |
 | Danny Miller - MEPAN Foundation @mepancure T1: The lack of standards and the usability of the data is awful (hundreds or thousands of pages of PDF) - how can someone easily find what they are looking for within the data? #patientchat |
| Patient Chat @patientchat #patientchat |
| AllStripes @_allstripes RT @vrulon: T1: T1: Access to your personal health data. Unfortunately, it's not that easy. Lots of obstacles. #patientchat |
| AllStripes @_allstripes RT @carlyflumer: T1: T1: I would say controlling your health data means signing up for patient portals & marking sure all info is correct. Also, sometimes full records are uploaded. Keep a paper trail just in case! #patientchat |
 | Brett Hansen @RadiologyAlly T1: One of the first steps in controlling health data is having secure, compatible EHR. Why do my providers still use fax machines and burn cds? I'm surprised that they're not still using 8-tracks to pipe in the muszak. #patientchat #ditchthedisk https://t.co/dKoSH2TUkn |
| AllStripes @_allstripes RT @sfcomms: T1: T1: The lack of standards and the usability of the data is awful (hundreds or thousands of pages of PDF) - how can someone easily find what they are looking for within the data? #patientchat |
| Alan Brewington @abrewi3010 A1 the fax machine vs paper vs electronic debate. Know what form you want your data in. Healthcare only wants to provide the cheapest form for them. Patients don’t have to by a fax to confirm. #patientchat |
| Dave deBronkart @ePatientDave @patientchat Oops sorry for omitting #patientchat. Stupid Twitter should always add it in replies but stupid Twitter. Thx. |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A1: In re reviewing your PHI #data in portals, if you find an error ... good luck getting it corrected. YMMV on Olympic scale there. I was Pt Zero in my fam for breast cancer, but fat fingered data entry at imaging facility said "fam history". Still there 10+ yrs ltr #patientchat |
| Patient Chat @patientchat T2 coming up... https://t.co/0fsmegf9nS #patientchat |
| Ody @OdyO11 @patientchat T1.1: Also: Having laws in place that give patients rights regarding access and ownership of their health data. #patientchat |
| Patient Chat @patientchat T2: Why is it important for patients to see their health data? #patientchat https://t.co/jIWYdlAAII |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey FAXING = BANANAPANTS IN 2020 Hello, healthcare, I'm calling from the future, where we have the internet. #bonfireofthefaxes #patientchat |
| Patient Chat @patientchat @ePatientDave Wouldn't that make life easy? 😀 #patientchat |
| Dave deBronkart @ePatientDave @OdyO11 @patientchat Unfortunately the law is already there, in the US, but is widely ignored. #patientchat. But that seems to be improving - see penalties in this post https://t.co/nInB1265Ex |
| Ody @OdyO11 @patientchat T2.1: To keep patient autonomy intact. To recognize faulty data and to have a chance to correct data and avoid whisper-down-the-lane effects and negative effects of misinformation. #patientchat |
| Ody @OdyO11 @patientchat T2.2: Important decisions about a patient's health and financial/social support are made on the grounds of health data. Health data is often believed over patients' own reports of their history, which can be very problematic. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ePatientDave @drbrowncares Should switch mine to Boudica for sh*ts and giggle. #patientchat https://t.co/NnlpcK28tN |
| Kathleen Maxian @KathleenMaxian T:2 Why is it important for patients to see their healthcare data? Let's start with the basics...Did you doctor or health professional get what you told them right. It's a 'double check' or their work, and good for patients to help them understand their health. #patientchat |
| AllStripes @_allstripes T2: 1/2 Your health data tells an important story! Especially in #raredisease patients often become experts and advocates, but that’s hard to do without a full picture of your own clinical experience. #patientchat |
| Ody @OdyO11 @patientchat T.2.3: Faulty health data can have severe negative effects for patients: Physically, psychologically, financially. Patients need to have access and control over their health data in order to protect them while they are in a vulnerable position. #patientchat |
| Patient Empowerment Network @power4patients T2: Check out @MightyCasey’s recent article “Artificial Intelligence in Healthcare” which is all about accessible health data #patientchat https://t.co/AoNl7aliZB |
| Alan Brewington @abrewi3010 A2 regardless of others legal opinion it’s my data and more importantly, a significant part of my patient story. Bad data won’t raise my quality of life which is my ultimate goal for being chronic. #patientchat |
| AllStripes @_allstripes 2/2 We all know putting the pieces together for #raredisease care is an ongoing challenge. Seeing all your information together gives a more holistic perspective. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @power4patients: T2: T2: Check out @MightyCasey’s recent article “Artificial Intelligence in Healthcare” which is all about accessible health data #patientchat https://t.co/AoNl7aliZB |
| Seth Rotberg @Srotberg15 It’s important for patients to track the positives and negatives of their health, especially when there could be trends based on your activity (i.e., exercising more, stressful new job, new medication, etc.) #patientchat |
| AllStripes @_allstripes T2: 2/2 We all know putting the pieces together for #raredisease care is an ongoing challenge. Seeing all your information together gives a more holistic perspective. #patientchat |
| Carly Flumer (she/her) @carlyflumer T2: Patients need *access* to their health records in order to see them (issue #1). They need to see them to keep them updated & correct. It’s also important for #continuity of care. #patientchat |
| Dave deBronkart @ePatientDave @patientchat T2: Why important? 1) 80%+ of records contain errors, which can cause good docs & nurses to do harm. (Almost killed my MOTHER, damn them.) #patientchat |
| Seth Rotberg @Srotberg15 RT @KathleenMaxian: T:2 Why is it important for patients to see their healthcare data? Let's start with the basics...Did you doctor or health professional get what you told them right. It's a 'double check' or their work, and good for patients to help them understand their health. #patientchat |
| Dave deBronkart @ePatientDave @patientchat T2: Why important? 2) It helps you do a better job of following up on the advice you bought. Example: https://t.co/Bd2uf4ntyP #patientchat |
| Carly Flumer (she/her) @carlyflumer @rdmd Rare and chronic disease patient right here!! #patientchat @_OurOdyssey_ |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A2: Being able to see results/info/data over time is hugely helpful, especially for peeps w/chronic or rare conditions. If you're not in either of those tribes, STILL useful to see stuff like labs longitudinally. #epatient #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @ePatientDave: @patientchat T2: Why important? 2) It helps you do a better job of following up on the advice you bought. Example: @patientchat T2: Why important? 2) It helps you do a better job of following up on the advice you bought. Example: https://t.co/Bd2uf4ntyP #patientchat |
| Kathleen Maxian @KathleenMaxian THIS!! #patientchat What you don't know...an kill you! |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @ePatientDave: @patientchat T2: @patientchat T2: Why important? 1) 80%+ of records contain errors, which can cause good docs & nurses to do harm. (Almost killed my MOTHER, damn them.) #patientchat |
| Dave deBronkart @ePatientDave @patientchat T2: Why important? 3) It can save you enormous amounts of $ spent on redundant tests & scans. #patientchat In short the REAL question is, why do they try to tell you it's NOT important? Some (not all) have nefariou$ motive$ |
| Vera Rulon FAHIMA @vrulon T2: #patients can track their progress, ID concerns, etc. #patientchat |
| Patient Chat @patientchat T3 coming up... https://t.co/0fsmegf9nS #patientchat |
| Seth Rotberg @Srotberg15 RT @carlyflumer: @rdmd Rare and chronic disease patient right here!! #patientchat @_OurOdyssey_ |
| Alan Brewington @abrewi3010 A2 bad data also hampers caregivers. They are our friends/lawyers/advocates/mothers all rolled into one package whose job is hard enough. #patientchat |
| Dave deBronkart @ePatientDave Not to mention the cost of correcting the harm done by those errors ... which the erroneous party is never responsible for, GRRR! #patientchat DEFEND YOURSELF. GET YOUR DATA. |
| Patient Chat @patientchat T3: What needs to be in place to support two-way data sharing in healthcare? #patientchat https://t.co/Tt2o5iAkrz |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A2 (sorta) Would have LOVED to have proof of my dad's full disclosure to ortho surgeon of his exact #Parkinsonsdisease status/issues pre-op hip replacement. First thing MD asked fam post-op "how bad is PD in that leg?" My dad was screwed 1/2 #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: What needs to be in place to support two-way data sharing in healthcare? #patientchat https://t.co/Tt2o5iAkrz |
| Seth Rotberg @Srotberg15 T3 I’ll sum this up with a GIF #patientchat https://t.co/uYqoeOyryD |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A2 (sorta) 2/2 Had 15 dislocations in following 18 mos before revision surgery (with different surgeon!). Learned A. LOT. back in 1996 😱 #patientchat |
| Brett Hansen @RadiologyAlly I believe that there is an old power mentality among some physicians that if they provide patients with their health data (reports, etc.) they'll be inundated with calls from panicked patients who can't read their reports. This is a misconception. #patientchat https://t.co/lYTE73b6sP |
| Carly Flumer (she/her) @carlyflumer T3: Data sharing means (to me) building a good rapport with your care team. Understanding each other on more than 1 level to be able to communicate effectively. Not all data is paper-based! #patientchat |
 | Mary MACK @MaryOCMack One is not to accept a blank test result as your “results” in patient portal. Happens way too much. Results are blank/zero details except your name. #patientchat |
| Alan Brewington @abrewi3010 A3 more active communication and listening. In the end, healthcare is most successful when everyone is included. The old us vs them attitude only acceraltes data errors and mistakes. #patientchat |
| Vera Rulon FAHIMA @vrulon T3: For 2-way data sharing to work, need to change the culture in healthcare, remove obstacles to interoperability, and educate people of their rights. #patientchat |
| Patient Chat @patientchat RT @abrewi3010: A3 more active communication and listening. In the end, healthcare is most successful when everyone is included. The old us vs them attitude only acceraltes data errors and mistakes. #patientchat |
| Dave deBronkart @ePatientDave T3: This is actually an enormous technical challenge. We already have fits getting our data OUT. Making all EMRs take data IN is a whole other level of hard. That's where #FHIR comes in. Learn about it. Ask for it. (Free standard, not a product.) #patientchat |
| Vera Rulon FAHIMA @vrulon @reepRN @patientchat Totally agree - though there is still push back from healthcare orgs for immediate access #patientchat |
| Carly Flumer (she/her) @carlyflumer T3: I would also say data sharing is having a provider communicate to you in a portal that makes sense. Please don’t provide 1-word answers. #medtwitter #patientchat |
| AllStripes @_allstripes RT @abrewi3010: A3 more active communication and listening. In the end, healthcare is most successful when everyone is included. The old us vs them attitude only acceraltes data errors and mistakes. #patientchat |
| Dave deBronkart @ePatientDave @patientchat T3 And that's just the technical part. Figuring out how to weave pt-generated data into the clinician's mindset, diagnoses, etc will take a full generation, I bet. #patientchat |
| Vera Rulon FAHIMA @vrulon @Crohnoid Welcome! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @RadiologyAlly Something @myopennotes has proved to be unfounded worry countless times, right @TheLizArmy ?? https://t.co/rLCC3YSsHM #patientchat |
| Dave deBronkart @ePatientDave @patientchat T3 #patientchat So it's time to get started!! |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @vrulon: T3: T3: For 2-way data sharing to work, need to change the culture in healthcare, remove obstacles to interoperability, and educate people of their rights. #patientchat |
| Dave deBronkart @ePatientDave btw uninformed skeptics are always questioning the 80% number. Well, go argue with the WSJ's story on this Geisinger story where they actually checked charts. https://t.co/N1xBiVz4uP #patientchat |
| Patient Empowerment Network @power4patients @Crohnoid Lol! Glad you can join #patientchat |
| Vera Rulon FAHIMA @vrulon RT @ePatientDave: btw uninformed skeptics are always questioning the 80% number. Well, go argue with the WSJ's story on this Geisinger story where they actually checked charts. https://t.co/N1xBiVz4uP #patientchat |
| Patient Chat @patientchat T4 coming up... https://t.co/0fsmegf9nS #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A3: for one with zero patience for laggards .... #patientchat https://t.co/sfbvC84Yug |
| Alan Brewington @abrewi3010 A3 access access access. Did I mention access. Technology to read/use health data is not cheap and easily accessible to all. #patientchat |
| Alan Brewington @abrewi3010 RT @Srotberg15: T3 I’ll sum this up with a GIF #patientchat https://t.co/uYqoeOyryD |
| Patient Chat @patientchat T4: What are some tips and cautions when protecting your health data? #patientchat https://t.co/gxdesRJL3s |
| Kathleen Maxian @KathleenMaxian T3: What needs to be in place to support 2-way data sharing in healthcare? #patientchat Here at @WNYOCP we're changing patient culture so patients see themselves as partners The importance of shared decision making is crucial Next step is to get the healthcare industry to buy in |
 | Dr M. Mahesh (ಮಹೇಶ್) (he/him/his) @mmahesh1 If physicians don’t provide patients health data - patients often reach out to Google and often find misleading or incorrect info - it’s a choice docs don’t/shouldn’t prefer |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: What are some tips and cautions when protecting your health data? #patientchat https://t.co/gxdesRJL3s |
| Vera Rulon FAHIMA @vrulon T4: Tip - share with your doctor, only people you trust #patientchat but we need to have control of who accesses our persona data. That's not happening. |
| AllStripes @_allstripes Yes! Our motto here at RDMD is Power to the Patients! We believe patients should be a crucial part of drug development and decision making. |
| Dave deBronkart @ePatientDave T4 #patientChat SHARE NOTHING, CLICK NOTHING health-related on Facebook. Nowhere on social media is safe (no HIPAA protection) but FB aggressively markets it. And it's not just advertisers - employers, insurers, anyone can get at it. |
| Seth Rotberg @Srotberg15 @reepRN @patientchat That’s very interesting and feel like it depends on the test result? Personally, I would want to know the results in person if something came back as something serious. Either way it should be communicated effectively with the patient. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A4: Be aware that online groups/forums, particularly on Facebook, are mostly leaky AF. READ the terms and conditions, or at least try to. Don't use any health-related apps that don't give you privacy policies in clear language, one page or less. #belikelight #patientchat |
| Alan Brewington @abrewi3010 A4 sharing = trust. In healthcare we are immediately suppose to trust a white coat or stranger with a stethoscope. Knowledge is the antidote to this so ask questions and research options. Asking questions also buys time. #patientchat |
| Kathleen Maxian @KathleenMaxian THIS! |
| Dave deBronkart @ePatientDave @KathleenMaxian @WNYOCP T3: Is @WNYOCP at all connected with the P3 Collaborative where I did some work years back, especially with Shelley? #patientchat |
 | Vince Kuraitis @VinceKuraitis Ponder this... #patientchat |
 | Ovarian Cancer Proj @WNYOCP @ePatientDave we are not? Introduction? |
 | The Advocate Is In @TheAdvocateIsIn RT @MightyCasey: FAXING = BANANAPANTS IN 2020 Hello, healthcare, I'm calling from the future, where we have the internet. #bonfireofthefaxes #patientchat |
| Patient Chat @patientchat T5 coming up... https://t.co/0fsmegf9nS #patientchat |
| AllStripes @_allstripes RT @abrewi3010: A4 sharing = trust. In healthcare we are immediately suppose to trust a white coat or stranger with a stethoscope. Knowledge is the antidote to this so ask questions and research options. Asking questions also buys time. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey ⬇️⬇️THIS NEEDS TO BE CARVED IN STONE ON A BIG WALL SOMEWHERE, WHERE EVERYONE CAN SEE IT. #patientchat #dataprivacy |
| AllStripes @_allstripes RT @Crohnoid: @patientchat T2: |
| Patient Chat @patientchat T5: How do you feel about the sharing of health data for research? #patientchat https://t.co/4wJD08sJm1 |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: How do you feel about the sharing of health data for research? #patientchat https://t.co/4wJD08sJm1 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @VinceKuraitis: Ponder this... #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @abrewi3010: A4 sharing = trust. In healthcare we are immediately suppose to trust a white coat or stranger with a stethoscope. Knowledge is the antidote to this so ask questions and research options. Asking questions also buys time. #patientchat |
 | Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A1: I use #patient portals a lot. Alas the information available to #patients isn't universal across #healthcare systems. Never tried Epic, a provider portal that has more of our info. Many #Hospitals use it so why shouldn't we? #PatientCare |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @vrulon: T4: T4: Tip - share with your doctor, only people you trust #patientchat but we need to have control of who accesses our persona data. That's not happening. |
| Kathleen Maxian @KathleenMaxian T5: How do you feel about the sharing of health data for research? #patientchat You better have my permission! |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey #patientchat |
 | Four Seasons Total Indictments @kyduchess RT @ePatientDave: T4 #patientChat SHARE NOTHING, CLICK NOTHING health-related on Facebook. Nowhere on social media is safe (no HIPAA protection) but FB aggressively markets it. And it's not just advertisers - employers, insurers, anyone can get at it. |
| AllStripes @_allstripes T5: We believe the more researchers who have access to #raredisese health data the better! We want as many people working on rare conditions as possible. Also critical to respect patient privacy, so measures like informed consent & de-identification of data are key. #patientchat |
 | Annette McKinnon @anetto RT @ePatientDave: @patientchat T3 And that's just the technical part. Figuring out how to weave pt-generated data into the clinician's mindset, diagnoses, etc will take a full generation, I bet. #patientchat |
| Carly Flumer (she/her) @carlyflumer T5: I support data sharing as long as personally identifiable information is removed. Data can help others learn!#patientchat |
| Alan Brewington @abrewi3010 A5 sharing data for research is a great way to practice being vulnerable. Assuming research is authentic & safe, pushing vulnerable levels gives research’s more info. Being more vulnerable makes our story better too #patientchat |
| AllStripes @_allstripes RT @carlyflumer: T5: T5: I support data sharing as long as personally identifiable information is removed. Data can help others learn!#patientchat |
| Brett Hansen @RadiologyAlly T3: To get comprehensive communication among providers and patients, the EHR business community needs to get on board to #ditchthedisk. Kudos to @ambrahealth for stepping up. https://t.co/WFRjCd1p36 #patientchat |
| Seth Rotberg @Srotberg15 RT @carlyflumer: T5: T5: I support data sharing as long as personally identifiable information is removed. Data can help others learn!#patientchat |
| Dave deBronkart @ePatientDave RT @KathleenMaxian: T5: T5: How do you feel about the sharing of health data for research? #patientchat You better have my permission! |
| AllStripes @_allstripes RT @abrewi3010: A5 sharing data for research is a great way to practice being vulnerable. Assuming research is authentic & safe, pushing vulnerable levels gives research’s more info. Being more vulnerable makes our story better too #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A5: LOVE the idea. But, and however, ONLY IF IT'S MY CALL. IOW, healthcare systems gotta stop "deIDing" (horse laugh!) my data, sharing it willy-nilly for "research" to who knows where. Including ADVERTISERS. Blargh. Why I didn't spit kit until @NebulaGenomics #patientchat |
| Dave deBronkart @ePatientDave RT @VinceKuraitis: Ponder this... #patientchat |
| Dave deBronkart @ePatientDave #PatientChat To the contrary, those people's whole business model is to NOT keep it private! It is in no way different from someone scooping up nude photos of someone and selling them. T5 |
| Dave deBronkart @ePatientDave This is EXACTLY why the @BeLikeLight crowd are trying to create a non-commercial but robust patient platform with true security. Check them out. #PatientChat |
| Patient Chat @patientchat BONUS question coming up... https://t.co/0fsmegf9nS #patientchat |
| Patient Chat @patientchat BONUS: From NCI’s Provocative Questions: What methods can be developed to integrate patient-generated health data into electronic health records? #patientchat https://t.co/w8dTnmHI4L |
| Mary MACK @MaryOCMack Share away, but don’t price us out. But often we are priced out. |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey A5: for peeps w/rare conditions, sharing can be lifesaving. Making the choice to share health data in those situations has to be a risk//reward calculation, for which I suggest genetic counselors + privacy experts (hmu if you want recommendations) #patientchat |
| The Advocate Is In @TheAdvocateIsIn Just to make sure you're holding steady. And sometimes the fastest way to know something ain't right. |
| Patient Empowerment Network @power4patients RT @patientchat: BONUS: From NCI’s Provocative Questions: BONUS: From NCI’s Provocative Questions: What methods can be developed to integrate patient-generated health data into electronic health records? #patientchat https://t.co/w8dTnmHI4L |
| Dave deBronkart @ePatientDave @KathleenMaxian Oops I forgot the video URL https://t.co/aSwGG9owmb #patientchat |
| AllStripes @_allstripes RT @MightyCasey: A5: A5: for peeps w/rare conditions, sharing can be lifesaving. Making the choice to share health data in those situations has to be a risk//reward calculation, for which I suggest genetic counselors + privacy experts (hmu if you want recommendations) #patientchat |
| Patient Chat @patientchat #patientchat |
| Alan Brewington @abrewi3010 Bonus CMS/ONC has now made collecting/access patient generated data apart of meaningful use (MU). I thought that would take a generation, our patient voices are working. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey BONUS ROUND: Thorniest piece of this is that health systems haven't figure out how to interop EHR platforms yet, so asking 'em to pipe in even more useful #data - PGHD - is like p*ssing into the wind. But I keep doing it anyway. https://t.co/IPTeuEU1ZA #patientchat |
| Brett Hansen @RadiologyAlly T5: A tangent of this is should the report featuring my data be used by publishers to make money? #patientchat https://t.co/rK3vrvUPFT |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @RadiologyAlly: T5: T5: A tangent of this is should the report featuring my data be used by publishers to make money? #patientchat https://t.co/rK3vrvUPFT |
| Patient Chat @patientchat Time to share closing thoughts (CT) on what you learned, were reminded of or can implement. You can start your tweet with CT: #patientchat |
| Alan Brewington @abrewi3010 Bonus Round - we need EHR designed by patients that will automatically talk with other EHRs and states Health Data Exchange’s. #patientchat |
| Dave deBronkart @ePatientDave @Crohnoid And it really isn't the adverts that are the security problem - they're just annoying & creepy. The problem is, EVERY SINGLE THING YOU EVER SAID OR CLICKED ON FB is in your profile, for "partners" to "select" by. No way to control (or even know) who uses it & how. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey CT: I'll just say that I hope we all survive 2020! Magic 8 Ball sez "cannot predict now" - SINCE JAN 1! #patientchat |
| Alan Brewington @abrewi3010 Ct everything starts and ends with active listening and communication. The rest we can solve through human centered problem solving #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @ePatientDave: @Crohnoid And it really isn't the adverts that are the security problem - they're just annoying & creepy. The problem is, EVERY SINGLE THING YOU EVER SAID OR CLICKED ON FB is in your profile, for "partners" to "select" by. No way to control (or even know) who uses it & how. #patientchat |
| Vera Rulon FAHIMA @vrulon @patientchat T5: depends on context. The @AllofUsResearch is great and very clear on how the data will be used. Note that many are now leveraging #realworlddata to research. Not sure many #patients know. #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 min past the hour. |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @vrulon: @patientchat T5: @patientchat T5: depends on context. The @AllofUsResearch is great and very clear on how the data will be used. Note that many are now leveraging #realworlddata to research. Not sure many #patients know. #patientchat |
 | Inspire @InspireIsHealth RT @Crohnoid: |
| Patient Chat @patientchat #patientchat is your community - so grateful to all of you who come and share. Reach out to @patientchat or @power4patients anytime. |
| Patient Chat @patientchat Join us for the next Friday 1pmET Empowered #patientchat on January 24th. https://t.co/TTGM261YW9 |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey CT: because I'm "that guy" I'll reshare my latest for @power4patients since it's (IMHO) relevant! https://t.co/x8kqIFxb2Y #patientchat |
| Patient Chat @patientchat @rdmd @power4patients I'm glad you could join in today, have a great weekend! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @Crohnoid @ePatientDave Twitter is NOT owned by Facebook. But Twitter does a lot of the same #data back end parsing/selling that FB does, and allows targeting of ads/promoted content based on that parsing. Instagram IS owned by FB. #patientchat |
| Dave deBronkart @ePatientDave @Crohnoid No, Twitter isn't owned by FB ... https://t.co/MyhVBcj0qK Twitter's no more secure than FB, but FB is the one that very aggressively & selectively collects, catalogs & sells everything you/we do there, for any purpose at all. #patientchat |
#patientchat content from Twitter.