Independence, Basic Rights & PHI

On the eve of our nation’s Independence Day, it is a good time to reflect on what this truly means to us, the US citizen and even reflect upon what this means within the context of healthcare and future reform efforts.

From the beginning, the writings of Chilmark Research have tried to steer clear of broad healthcare policy discussions. Lord knows there are more than enough Blogs and posts addressing that subject.  But healthcare is, by its very nature, directed by policy at all levels and one can not look at issues in the HIT market without some reflection on the policies in place or being developed that may drive technology adoption and use or hinder it.

Originally, we also intended Chilmark Research to focus on consumer-facing technology, but how naive we were to think that we could look at only these applications without considering their context, use and ultimately, the data they would gather and present to help a consumer better manage their health.  Thus, applications such as EMRs, or the new buzzword, “certified EHRs” which create some of the richest and most useful health data as well as future exchange architectures/platforms (NHIN, RHIOs, HIEs) have fallen into our area of coverage.  In doing so, however, we always keep the thought in the back of our minds: How will this technology, how will its use be reflected within future consumer applications?

Now within the context of healthcare is a smoldering issue that could ignite into a firestorm, the issue: health data access and ownership.  A little over a week ago we did a post of the Health Data Rights declaration, a simple declaration stating  the consumer has basic rights to their health data.  Chilmark Research, along with some 950 others, endorsed this declaration and encourage you to do so as well.

Honestly, the declaration is not that revolutionary as it simply restates rights already supported by HIPAA in simpler, more understandable terms. What is surprising though is the lack of endorsements by providers and payers of this simple declaration, which is it not fundamental to our rights as individuals?  After all, is not personal health information (PHI), be it claims, lab data, medication data (PBM data), images, and other clinical information not ours? Does it not fundamentally belong to those for which it is about?  Is it not an individual we are talking about and without that individual, this data would not exist?

This is the smoldering issue underlying basic questions such as:

• Who ultimately has access and control of the data?
• Who decides who sees the data?
• Who has the right to add notes to a record, to suggest corrections?

These are critical questions that require thoughtful, meaningful discussions among all stakeholders to address fears, and concerns. But let us not needlessly bog-down (this industry sector seems famous for that) in meetings that go in circles. Reach a level of consensus and move ahead.

When we celebrate the brilliance of our founding fathers tomorrow, the Declaration of Independence and Bill of Rights they created which have held up so well for these 200+ years, let us also begin reflecting on a citizen’s right to their personal health information. No longer should a consumer be held hostage, it is time to storm the barriers and take personal control of one’s most personal details, their PHI.