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.
Hey Brian, it's really great that you're doing this :)
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.
What was the actual process of acquiring your entire medical record? My understanding was that this information can be highly fragmented depending on the number of different places one has received medical treatment.
110% true, and I can give multiple examples of this
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
Thanks for this! Have you considered sharing DICOM files, too (i.e. the actual images from your MRI, in addition to the reports)? If so, what went into the decision not to include these?
If you're interested in loading the DICOM files into a real viewer, you can try http://www.pacsbin.com, a project I've been working on to keep a personal store of medical images and easily share them on the web. Everything you upload is be auto-anonymized, and you can view the images the same way a radiologist or other physician might.