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Harlan Krumholz @hmkyale
, 11 tweets, 22 min read Read on Twitter
1/ Is my dream that future of medical research can include category for people-powered data collaboratives. Barbara Evans and I lay out a path. Here is #tweetorial.… @PCORI @EmCollective @gatesfoundation @NIH @EricTopol @wilbanks @YaleMed @sharonfterry
@PCORI @EmCollective @gatesfoundation @NIH @EricTopol @wilbanks @YaleMed @sharonfterry 2/First, we acknowledge most research done person at a time, w/individual consent. But what if people facing common conditions provided collective consent to their health data to researchers they choose. People powered.…
@PCORI @EmCollective @gatesfoundation @NIH @EricTopol @wilbanks @YaleMed @sharonfterry 3/What could it be like to speed research if people could gain agency over their data & seek others to move quickly & responsibly to leverage data for discoveries. To treat the community of people as partners. Respectfully. Appropriately. Sharing insights.…
@PCORI @EmCollective @gatesfoundation @NIH @EricTopol @wilbanks @YaleMed @sharonfterry /Surveys show that up to 80% of Americans would like to contribute their data for socially beneficial research yet do not do so. Maybe it would be different if we enabled them more control, more respect – more agency over their data.…
@PCORI @EmCollective @gatesfoundation @NIH @EricTopol @wilbanks @YaleMed @sharonfterry 5/Data-holder-driven strategies skirt the need for patient engagement, which may seem expedient but can ignore individuals’ preferences about the use of their data. And it can undermine trust.…
@PCORI @EmCollective @gatesfoundation @NIH @EricTopol @wilbanks @YaleMed @sharonfterry 6/A truly people-centered system would acknowledge the agency of individuals over their own data and harness the potential of partnering with people to assemble high-quality longitudinal data resources.…
@PCORI @EmCollective @gatesfoundation @NIH @EricTopol @wilbanks @YaleMed @sharonfterry 7/Privacy Rule already grants people a right of access to their designated record set, which includes medical, billing, and other information held by HIPAA-covered entities in digital and physical files.…
@PCORI @EmCollective @gatesfoundation @NIH @EricTopol @wilbanks @YaleMed @sharonfterry 8/larger challenge is to make it simple, attractive, and perhaps even enticing for people to work together to build large, collective data resources and to give people a meaningful voice in deciding how, and on what terms, their data can be used.…
@PCORI @EmCollective @gatesfoundation @NIH @EricTopol @wilbanks @YaleMed @sharonfterry 9/We propose people-powered data collaboratives: self-governing communities of individuals empowered by access to their own data. …allows for the power of collective data governance and, ultimately, collective wisdom.…
@PCORI @EmCollective @gatesfoundation @NIH @EricTopol @wilbanks @YaleMed @sharonfterry 10/People-driven collaboratives are a bold approach to engage people, overcome regulatory barriers, and create data resources that reflect the public’s real health experiences. Time to try.…
@PCORI @EmCollective @gatesfoundation @NIH @EricTopol @wilbanks @YaleMed @sharonfterry This is new category of research... where we don't talk about researcher engaging subjects (finding, following, capturing them) ... but people w/data and health questions/needs engaging researchers w/integrity to learn rapidly from the collective data...produce collective wisdom.
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