Author here, If anyone has any questions about dealing with the medical system or about clinical trials ask away!
I'm just making my way out of a course called Health Informatics. Most of what we've done is look at HIPAA, and the standards that make sending patient info from one hospital to another possible. In general the whole situation in a mess. I understand the purpose of not sharing identifiable data with the world, stops people from targeting people because of their conditions. But we have a wealth of information that's been made effectively useless from a research perspective.
this isn't much of a question, just wanted to express my frustration with the whole thing as well. that said I've got a lot of respect for your mission, and the balls required to publish your otherwise HIPAA protected info.
The comment literally starts with "Author here"
If there's more to your medical history that you want to track down, or you want to get your data transformed into a structured format, you should reach out to us at PicnicHealth and we'll see what we can do.
1) Fortunately I went to just one provider for all my treatment and they make the entire EMR extract available for patient download through their website (Sutter Health in CA) props to them for doing a great job at this
2) When dealing with issues w/ other family members and friends we've often only been able to get very minimal data extracts and had to actually fax in requests to get the full medical record sent to us on a CD weeks later.
3) Services are now popping up to do that for you, picnichealth, patientbank, etc. and they should be able to get your full detailed record to view for a cost instead of doing it yourself