I’m an occupational therapist in Canada, and very interested in the potential for “agent-centric” approaches to managing client data.
I remember a few years ago there was a community member named Steve Melville who was working on an idea he called Holo-Health. I haven’t seen any trace of him for quite a while now, so I’m not sure you’ll be able to connect with him, but I’ll summarize some notes I took from a presentation he did on it once:
His basic idea was that people interact with multiple providers: clinics, hospitals, pharmacies, labs, etc (in your case it could be various kinds of mental health providers as well), and usually treatment plans are “clinician centric,” meaning plan of care is specific to each discipline/provider. He imagined that care plans could be longitudinal and “patient centric” where the person could bring their own health data and care plan with them wherever they go and different providers could collaborate to help build upon it over time. The client would have agency to choose what to share with whom.
He planned to use FIHR standards to ensure common terminology, syntax, and semantics of data.
Additional perk: Health researchers could pay clients for use of their data. Clients can choose to use/sell/donate their data, because they have ownership and control.
There would likely still be much reflecting to do in terms of how to ensure HIPAA compliance when you have people managing their own data. I assume data would have to be redundant within the specific providers records, and/or there may have to be some kind of multi-sig key restoration process in case the person loses their data somehow. I’m not very familiar with HIPAA and all that, but I imagine since this is a very cutting-edge way of approaching things it will require quite a lot of thorough planning and consultation with knowledgeable folks.
I’m far from being an expert in all this, just a guy on the Internet who has thought about it a bit. But if you think you would find it helpful to chat with someone, let me know and we can set up a meeting. I also have a fairly good lay-person’s understanding of Holochain as a technology, but others will be much better suited to answer tech questions than me.