Chatting about #informationblocking and #patientjournalism

Most of you who know me or follow me know that I am passionate about interoperability and access to medical information via FHIR APIs and Continuity of Care Documents. I have spent the last 14 years of my life trying to make those models better for people as have thousands of others. The technology developed by HL7 are more than sufficient to share a US based medical record and we should be proud of that accomplishment. There is no technical reason that I should not have access to my health information.

The reality is that my experiences in getting my own medical record have been frustrating, even in recent years. The net result was a failure each and every time: transitions of care, access to a CCD, access to FHIR data. Being a healthcare interoperability developer, I always try real world testing to see if what we actually developed or certified in the labs works for humans.

Unfortunately, I have never documented it. I just shook my head and hoped for it to be better, someday. I think that has to change, now. So I am going to chronical my attempts to get my medical record. hopefully others can do the same. if you use the hash tags #ididit or #HealthITFailure, it could help the Assistant Secretary for Technology Policy Inspector General remedy the situation if your failure is caused by information blocking https://oig.hhs.gov/reports-and-publications/featured-topics/information-blocking/.

I am entering this experiment with some prejudice based on my prior attempts, but I will promise to give the new people I interact with the same level of respect and knowledge transfer in my attempt to get my record. This is not a game of gotcha. I don't yet know if/what is causing the problem, but I intend to uncover it, so we can fix it.

As always: here some Chat GPT on the subject:

https://chat.openai.com/share/879ebcda-d926-4339-b0f7-af1a5e5d9218