Yesterday I was fortunate to be able to attend the Office of the National Coordinators (ONC) Roundtable: Personal Health Records-Understanding the Evolving Landscape. This event launched en force the call for comments concerning Personal Health Records (PHRs) by ONC, which is due December 10, 2010. By now you’ve probably picked up on the fact that I attend many of the ONC Proceedings—this was one of the best groups of panels I have seen. The content was widely varied—but like any discussion, could not touch every aspect of PHRs. It was very aptly held at the Federal Trade Commission, who on December 1, 2010 released the timely report: Protecting Consumer Privacy in an Era of Change
Here is a broad summary of my thoughts from the roundtable:
- Definition of Personal Health Record: While there is no shortage of definitions- MedlinePlus, Centers for Medicare and Medicaid Services, WebMD,Wikipedia, Center for Democracy and Technology—the main point is that the consumer/patient has access to the data to make important decisions about their own health care.
- HIPAA or Not?: Most health professionals use the term HIPAA (Health Information Portability and Accountability Act) synonymously with “privacy and security of health data.” While this covers most EHR use situations, PHRs are a different story. At present it is a tangled web and depends on how the PHR is used and by whom; the Federal Trade Commission holds the most control (if you use the term loosely)—much more needs to be fleshed out in this area.
- Landscape of PHRs: There are incongruent aspects of all areas of PHRs, and trying to understand the big picture is a bit like herding cats (my wording, not theirs.) There were multiple examples of potential and actual problems with patient/provider use of electronic health data. This result is from a plethora of rapidly evolving mobile technologies and applications mixed in with different access and use of data, and inconsistent terms and regulations.
The point not to be lost is that there are many successful PHR models (Dossia, Kaiser Permanente, Active Health Management (Aetna), Google Health,) and “platforms” such as Health Vault that have be in place and working for patients—perhaps not in conjunction with their doctors—but it’s a start! This is of course, part of a path to consumers/patients becoming more engaged, involved, and active in their health care.