Personal Health Record Challenges

The Journal of the American Medical Informatics Association has an article entitled The Early Experiences with Personal Health Records [Volume 15, Issue 1, January-February 2008, Pages 1-7] (found via Constructive Medicine 2.0).

I've discussed PHR a number of times in the past. This article details three PHR implementations and discusses past and future challenges. Many of these are access policy issues -- privacy, security, data stewardship, and personal control. There are also many technical challenges. For example:

Thus, we will need to modify our existing PHR systems to support a service oriented architecture that permits multiple applications to retrieve our institutional data with patient control and consent. Providing such an architecture will require the nation to create and adopt national standards for clinical data content transmission, terminology and security to ensure interoperability.

I've also previously discussed interoperability in some detail. A SOA is a great idea, but with so many standards and proprietary implementations out there, it seems like the only way a national standard will ever be adopted is if the federal government steps in. This would require not only the definition of what the standards are, but what types of PHR/EMR systems are affected, along with a time-line for mandatory implementation.

All of that seems like a tall order. The technical aspects alone would be tough, but getting it done would also require a political process that would likely drag on for years. You really have to wonder if a national standard for interoperability is even possible?

Their conclusion regarding the importance of the P in PHR is a good one:

By placing the patient at the center of healthcare data exchange and empowering the patient to become the steward of their own data, protecting patient confidentiality becomes the personal responsibility of every participating patient.

On a semi-related note (i.e. isn't worth a separate post, so I'll park it here), I finally saw Michael Moore's movie SiCKO the other day. It achieved a certain level of shock value regarding how people in the US are treated by insurance companies and HMOs, but it was a disappointment overall. It made no effort to further the understanding of why the health care system in this country is so messed up in the first place or to try to suggest ways to improve it. Instead it just showed the US problems and quickly turned to how great the UK, France, and Cuba socialized systems are (gosh, you mean you don't have to pay any money at all!). Oh well, that's Hollywood for you.