Kibbee/Markle: Exploration of Consumer Access to Networked Health Information

Dr. David Kibbee provides great insight on the meeting by the Markle Foundation and what it might mean for Health 2.0, consumer driven health care and how health data is managed by traditional health care providers and payors. Well worth the read for anyone interested in where health information might be headed.

I look forward to reading the public policy document cited in his post, Consumer Access Practices for Networked Health Information." Dr. Kibbee hits on a point that I continue to explore from a legal perspective. He makes the statement:

Markle has lifted the discussion onto another level, and this time it's about health data, its ownership and rules of access, and its uses in our nation to promote health and wellness.

We are in the midst of a wave of change in the ownership rights of health information and data. Traditionally (and legally) we have viewed health data as owned/controlled by one group or another (what Dr. Kibbee refers to as the institutional custodians). For example, physician/hospital who owns the patient's paper medical record or insurer who own beneficiaries payment/claims information.

Typical state law support such ownership notions. Most state laws provide you and I as patients the right to copy our records. Some states go as far as providing you and I a right of access. However, to my knowledge no state law takes the alternative approach of the patient owning the records and providing access rights. Most state laws, if not all, base the ownership right on the originator or creator of the medical record. Even the HIPAA privacy rule that evolved to its present state in the late 1990s and early 2000s speaks in terms of a patient's "right to copy" and "right access to records". At no point does it speak of patient's ownership of the records.

Our legal system have very strong views on "ownership" rights. In fact ownership is a basis legal premise build into the fabric of everything we do. With ownership comes notions of control, propriety nature, privacy, competition and power (financially and otherwise). I subscribe that this foundation has largely been the reason we have yet to see integration, standardization and openness of health data exchange. Dr. Kibbee gets at this question in his post when he discusses the spirited debate during the Markle conference surrounding the question of how to "liberate" personal health information.

Dr. Kibbee also gets into the difficult questions that I am constantly struggling with regarding privacy (how much is too much and how much is not enough) and introduces the concept of "fair information practices". Balance between a patient/consumers right to control access to health information, need for access by health care professionals, reasonable protections to prohibit the breach of data, rights of governments to access/use data for particular purposes, etc.

In reacting to Dr. Kibbee's worries that physicians are not embracing the change -- I suspect this is largely due to the current reimbursement system that we have created to pay for health care. My view is that until this reimbursement model changes to create financial incentives for wellness and management of chronic disease it will be difficult to bring about change via the physicians.

These are my initial reactions (stream of consciousness) after having read Dr. Kibbee's very insightful and thought provoking post. I hope to have a chance to come back and think some more about his post and my reaction.