I have a lot of thoughts about all of the news this week. Folks have done a great job explaining it (hat tip to Brendan Keeler for his excellent explanation). So my thoughts will be brief.
1) Misusing purposes of use or setting up shady practices which just barely meet the definitions if you squint real hard at them is NEVER ok. We owe so much more to patients than that. Be better.
2) It is especially reprehensible if data is being used to allow law firms to search for class action lawsuits. My private healthcare data should never be used to allow ambulance chasing lawyers to find cases. If I want to file a case that's for me to decide, accessing my personal information to decide that for me, NEVER ok. Again, be better.
3) Many of us have been pushing hard (some of us since 2017 and the first draft of TEFCA) to expand the purposes of use within HINs so that folks have legal and appropriate avenues to access data bringing transparency to data sharing. This gives patients more choices not less and ensures an even playing field. The slow walking being done on payment and ops and broadcast/identity based individual access (and let's be fair their are financial motivations by some of the orgs to slow this down) is not acceptable. We have to move to expanded permitted purposes that take into account who the requestors are and how they will be using data and ensure both of those are clear to data holders.
4) Trust but audit/verify is key to trust at a national scale. If you are an EHR vendor you must have systems in place that can identify abnormalities and patterns in data requests. HIEs have had this technology in place for years. HIEs that have very little funding, have systems in place that can identify odd requests and immediately stop them. EHR vendors have no excuse not to have equivalent technology in place.
Bottom line: Be better. Don't break an entire system that is vitally important to the health of patients just to pad your pockets. Maybe take a second to think, would I want my health data or my family member's health data used in this way. This is not just data. This is incredibly personal information about people; information we want them to share with their doctors freely, which they will not do if they can't trust it won't be kept private. So be better.
CEO, Advize Health
2moHad me at Townsend 🎸