Decentralized Health Record Need for NIH Volunteer Large-Scale Health Study

Matt Might is covering the current NIH workshop on a large scale health study (1+ million volunteers) initiative. Along the way, he mentions the need for a peer-to-peer secure system to hold participant health records:

In the limit: Peer-to-peer EHR networks?

I pondered with other participants the possibility of taking the federated model all the way to the limit: allowing individual participants to not only be owners of their EHR, but to also be the holder of that data.

While the infrastructure to do this doesn’t exist yet, it’s conceivable that third-party EHR brokerages could make this manageable.

Taken to the limit, individual participants would even have the capacity to review and approve the requested queries and their results before consenting to participation.

Making participants the brokers of their own data also puts it in the hands of the one person most likely to spot errors in the data: the participant herself.

I don’t think a model of fully distributed EHRs is practical in the short run, but it would provide significant advantages in the long run.

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Overall, I like the idea. One thing tough… if I end up in A&E, I’m in no physical state to grant the chief surgean access to my file. Something has to be designed for that case too.