I have not written a blog article on the output of the Panel discussion I lead at the ONC Interop Forum. The discussion I wrote up before the event is a good place to start. The panel, as one would expect, did deviate slightly with a much more focus on:
- Difficulty implementing Privacy controls with the large number of privacy regulations. This complexity becomes very difficult around the edge cases: Going across state lines, Emancipated Minor, Minor transition, Elderly delegated access, etc. The panel members were NOT looking for less privacy rights, just more clear rights.
- There is some benefit to federation level overrides such as we now see with Europe GDPR
- Provenance of the data submitted by the Patient. Where did the Patient get the data? How do we know the Patient hasn’t changed the data? Most Patients are good, but some are being nefarious, for example drug seeking behavior. There is a need for clear guidance on minimal Provenance information.
- The four modes of communication became more clear as well as a model to discuss the interactions with the Patient.
- Ask to ONC, from Sean during my panel “Please help make the right thing to do, the easiest thing to do.” Simplify Privacy complexity without removing privacy rights.
- Patient population is not uniform. There are some Patients that want to be very actively involved in the flow of their data, there are many other Patients that want their data to be readily available for Treatment purposes without them needing to get involved.
Luck for me the day 1 and day 3 reports are available on YouTube now, published by ONC. There are two recordings of significant length. Each minute is useful to listen to.
See the video of me reporting out on the third day just prior to hour 2 of the 6 hour recording available. The following video should start right at the beginning of that report out (2:16:00). Additional action items for ONC from my panel at 2:36:15. Response to Adrian Gropper question at 2:43:29 regarding patients activity.
Brand new sport coat… How do I look?