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GoInvo: Own Your Healthcare Experience: An Open-Source Path
Jan 11, 2022
Key SpeakerJuhan Sonin, Director & Sandpaper of GoInvo

The data that drive our care, the algorithms that dictate our parents’ and children’s care, our neighborhood’s care, our nation’s care, and the decisions behind the everyday health services we rely on are governed by black boxes and are owned and sold by others without regard for the individual patient or the health data they enable.

Healthcare is too important to be closed. When patients own their health data and demand that healthcare services are open source, the big data aggregators, private equity firms, life sciences companies, providers, payers, and application developers will have to change how they use patient data and prove that their use will directly benefits patients.

Healthcare is too complex to confer data ownership to anyone but the individual patient or their designee. Fixing problems of patient authentication and identity (“patient matching”), patient consent, and interoperability are impossibly costly and ineffective without the patient solving these problems directly.

Healthcare is too personal not to have patients owning and controlling their health data. Only the individual should determine whether their data are used for purposes beyond direct patient treatment, payment, and operations. For other purposes, patients should benefit directly, even financially, from any secondary uses of their health data.

Key points include:
  • How you don’t own your health data and why you should. Neither HIPAA nor the EU’s GDPR have provisions for ownership, only access.
  • Health data includes more than you think. Labs and encounters are a tiny fraction of our total “data” package.
  • When you own your data, you control access. Our data rights should include the ability to share, update, sell, and destroy data. All 4 are ownership rights.


      Presentation Slides: https://www.dropbox.com/s/1ntgpkecyl8ommx/OS_Healthcare_25min_11Jan22_MAdata.pdf?dl=0


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