Discover and read the best of Twitter Threads about #PatientsIncluded
Most recents (5)
@ePatientDave @HealthHats @DrDannySands @lizsalmi @tessajlrichards @BMJPatientEd So much truth - IMO this flip to consumerism WITHOUT full participation of both clinical experts and patient community leaders in creating health literacy resources for humans is root cause of much "I did my own research" nonsense now driving medical misinformation online.
@ePatientDave @HealthHats @DrDannySands @lizsalmi @tessajlrichards @BMJPatientEd What I mean by that is "the academy" (in this instance the @AmerMedicalAssn who I give fish-eye to on the regular over their K St lobbying in service of status quo in US healthcare spend, but I digress) has missed eleventy-million-and-five opportunities to ... /2
@ePatientDave @HealthHats @DrDannySands @lizsalmi @tessajlrichards @BMJPatientEd @AmerMedicalAssn Team up with patient community leaders savvy in comms, community organizing, and *science* to build health literacy resources that can be deployed all over ever'where to help humans be prepared to made decisions about their/their families' health. /3
Has arrived! ONC’s Cures Act Final Rule supports seamless and secure access, exchange, and use of electronic health information. 'rule is designed to give patients and their healthcare providers secure access to health information.’ healthit.gov/curesrule/ 
'The rule includes a provision requiring that patients can electronically access all of their electronic health information (EHI), structured and/or unstructured, at no cost.’ #patientsincluded @ePatientDave
@BraveBosom @AmyPricePhD @HealthPrivacy @JodiDaniel
@BraveBosom @AmyPricePhD @HealthPrivacy @JodiDaniel
@ePatientDave @BraveBosom @AmyPricePhD @HealthPrivacy @JodiDaniel 'Finally, to further support access and exchange of EHI, the rule implements the information blocking provisions of the Cures Act. The rule outlines eight exceptions to the definition of information blocking.'
Hmmm...'Innovaccer’s goal is generate 100m unified patient records ...pulls from health plans, pharmacies, 1° care providers, hospitals,labs by connecting w/ >200 IT vendors.’ Can patients get their data? How can such data be de-identified? Patients know? medcitynews.com/2020/02/innova…
My point is that many hospitals voice concern about patient access to their data through open APIs - yet they give patient data to commercial entities that create easily identified patient records for sale. Shouldn’t we focus this, HIPAA-condoned practice first? @SavageMeHealth
@SavageMeHealth The open APIs give patients choices and access. We need to find ways to help them protect themselves. The current practices give data to commercial entities to sell w/o transparency or patient knowledge. Or patient access. @ePatientDave @BraveBosom @MightyCasey @lisabari
(Thread) Reflecting today after an incredible few days in Washington DC at #HDpalooza & #NHPC20 which gave attendees the best of both health data & health policy innovation worlds.
@RasuShrestha @ePatientDave @BeLikeLight @vishnu_saxena @DrSimpsonHSR @HealthPrivacy @coffeemommy @KBDeSalvo @fredtrotter @DCPatient 2) How can I express how grateful I am to have attended as a patient scholar?! What an amazing, enriching experience! Thank you @AcademyHealth for continuing to prioritize & model #PatientsIncluded! Clearly it can be done. Conference organizers, take note. #HDPalooza #NailedIt
@RasuShrestha @ePatientDave @BeLikeLight @vishnu_saxena @DrSimpsonHSR @HealthPrivacy @coffeemommy @KBDeSalvo @fredtrotter @DCPatient 3) The takeaways are clear:
👉Patients have a RIGHT to their health data & the boundaries of access, control, #privacy, & choice have never been questioned, contemplated, & examined more or pushed farther than ever before.
#HDPalooza #NHPC20 #PatientsIncluded #UnblockHealth
👉Patients have a RIGHT to their health data & the boundaries of access, control, #privacy, & choice have never been questioned, contemplated, & examined more or pushed farther than ever before.
#HDPalooza #NHPC20 #PatientsIncluded #UnblockHealth
1/12 Some thoughts after the recent #PatientsIncluded #Cochraneforall conference and discussion about the value and method of involvement. We couldn’t say this in a key note unfortunately @cochraneconsumr Thread.
2/12 Cochrane has much to celebrate about its involvement. Cochrane’s healthcare consumers are an essential part of the organisation & were from the very beginning. Today there is an international group of consumers 1,500+ strong, represented in 80 countries around the world.
3/12 We know why consumers volunteer because they told us in 2015 in a survey. They are all united by an interest in evidence-based medicine, and a desire to be a part of creating Cochrane evidence. consumers.cochrane.org/ccnet-structur…
