Hello, my name is Jeanine Beverly and I actually have a masters in Social Work and have a huge interest in making an app that is also geared towards information and resource services. I am looking to make an app to help network mental health non-profits and doctors offices and would love to know if Holochain would be a good addition as a way to secure client data safely. I am kind of new to understanding crypto but I am looking for an easy to use safe way to keep client data secure and HIPPA compliant.
Is there anyone here I can speak to about this ongoing project? I have a very small team already and a legal company registered for it, and we have much of the coding and some UI done. I have also worked within a Government setting already and once finished they agreed to do a Government contract here in the United States / Oregon.
I just need more resources myself and also I need to network more to understand how to go about this whole process.
I would love to pick some brains about my company and also meet some fellow holochain investors / potential hosters!
Jeanine,
Welcome! I’m thrilled you are tackling such an important issue.
I’m a Holo host, and volunteer…not a developer. I’d be happy to share with you what I’ve learned and hopefully point you in some good directions. Message me directly if you are interested and we can set up a call. The community here is very supportive.
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.
I am no expert on this and have never worked in the health industry so I am only speaking from my recent experiences recovering from a severe Vitamin B12 deficiency along with my life-long interest in the world of general purpose computing!
Thought I would drop in a couple of links as there’s other communities working on what I believe has some cross-over with your interests, innovation, ideas, and ideals:
The GNU Health project provides the tools for individuals, health professionals, institutions and governments to proactively assess and improve the underlying determinants of health, from the socioeconomic agents to the molecular basis of disease. From primary health care to precision medicine.
GNU Health is a Libre, community driven project from GNU Solidario, a non-profit humanitarian organization focused on Social Medicine. Our project has been adopted by multilateral organizations to national public health systems around the world.
GNU Solidario is a non-for-profit organization that works globally, focused on Social Medicine and health informatics (using Libre Software).
GNU Solidario is the organization behind GNU Health, the award winning Libre Health and Hospital Information System, deployed in many health and research institutions around the globe.
My personal ideal would be everyone stores their own data in their own home on something as small as a HoloPort Nano. There’s legal differences between you storing your data in your own home as opposed to not in your own home. I’ve not thought long and hard enough about health data for this though, but ownership and openness is key as I believe it would be good to be able to have “diagnostic layers” so for example you could apply a B12 deficiency calculator layer to your data so the algorithm is applied but the person with the algorithm doesn’t necessarily need to know what your data is.
