Rob's Rants

Lawsuits ... We need Lawsuits ...

ePatient Dave made a blog post yesterday looking for ideas about a talk he is going to give on patients having unimpeded access to their medical records in a forum on Participatory Medicine. It got me thinking enough to add some comments.

For those of you not following the idea, Participatory Medicine is the concept that the relationship between a patient and their providers should be more of a collaboration on health and treatment than a one-way pipe of doctors telling patients what to do — the patient should participate in treatment options as much as the doctor does. This is probably over-simplified, but the concept is certainly new enough to scare a lot of the medical establishment. The underlying principles are that, in an information-enabled age, patients and patient-communities are often able to digest and process important information about their conditions faster than the medical establishment, and therefore, these educated medical consumers should play a co-equal role in directing their own care. The movement is best embodied in places like Dave’s blog as well as e-Patients.net. One of the planks of the platform is that patients should have access to their records at any time, in order to have all the basic information they need to make sound decisions.

Participatory medicine is an idea that I would say I am interested in, more than I am a passionate advocate for. Probably because I’ve been pretty healthy so far in my life and really don’t have a medical record to speak of that I’ve ever tried to access. But Dave’s call for questions did get me thinking.

The concepts surrounding Participatory Medicine are complex: is medical information available to the average patient reliable? Is the average patient capable of separating the quackery from the valuable? Are patient communities really good at distilling information, or do they perpetuate rumor and innuendo?

The one on my mind (and Dave’s too) is this: in a medical record, who owns the information? Clearly the information is about the patient — so the easy answer is to say that the patient “owns,” or is at least entitled to access this data. But I can’t really think of a precedent for this line of thought in society. For example, a biography may be the life story of a particular person, but upon completion, the rights to that story are given to the author, not the subject. Why is this? Because a biography is more than a collection of facts; it includes analysis and structure that are the creation — the intellectual property — of the author. I have to think that the same is true of a medical record. Sure, the record contains biometric and physiologic data from the patient but, particularly in long relationships and complex cases, it also contains diagnoses and theories and notes. Things that are the creation of the provider (and the institution). And I am therefore willing to concede that the providers creating these records should have some say in what happens to them.

The dilemma I’ve just laid out could be solved simply by defining what is and what isn’t a “medical record.” And going forward, I think this will happen. Data and facts (tests, observations, etc.) will be part of the “record” and made available to the patient while thoughts and speculation and internal conversations will become part of an internal archive that providers will keep to themselves. But the future isn’t the problem — Dave and the Participatory Medicine advocates are more concerned with the current medical record than they are with the future one. And the current record isn’t so well defined.

The question then becomes, why are providers and institutions so reluctant to open this archive to patients on demand. And the conclusion I drew was fear. Fear of many things in fact:

• Fear that patients won’t properly understand what was written and why.
• Fear that the record will reveal mistakes made in the past.
• Fear that patients will see all the details about what their insurance company was charged and ask “what is all this?”
• Fear that proprietary procedures will be revealed.

I don’t believe that malpractice lawsuits are a significant contributor to medical costs (an opinion shared by others including parts of the medical insurance industry itself and some prominent economists). But I do believe that institutions would rather avoid them. And I believe that there is a deep-rooted fear among individual providers and institutions that releasing historical health records would create an entirely new industry of “medical record trolls” combing through page after page looking for any possible error that could result in a lawsuit.

So my thought is that there needs to be some sort of protection in place before we will really see providers opening the archives. And I wonder if some sort of indemnification is warranted for the sake of opening the archives. Sort of a legal waiver guaranteeing that people won’t release the records to the Trolls. I think that if there were some sort of standard format for these agreements, we’d see institutions opening up the archives more quickly. And I think that this protection is a small price to pay for the benefit of really seeing one’s history.

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Related posts:

1. The Participatory Medicine Cluetrain
2. Thoughts on Healthcare & Payment Reform
3. Raising a Participatory Patient