Who owns your medical record?

by Karoli on April 22, 2009 · 4 comments

in Patients, Providers, Tools

This is my dilemma over the EHR debate: Why don’t I have full access to my own medical records? Try to go get access and see how far you’ll get. I discovered this several years ago when my insurance company denied coverage for a prescribed medication and I had to file several appeals. My appeals had to include the reasons why this, and only this medication was prescribed which meant getting the doctors’ notes and records to support his decision to prescribe it. (Something he had already submitted to them, by the way).

It took much screaming and gnashing of teeth to get anywhere with it. It seems that those notes are not for the patient; they’re for the doctor. I suspect this is a side effect of the practice of defensive medicine, but whatever the reason, I had to sign away my firstborn, the equity in my home and hold everyone harmless right down to Dick Cheney.

Okay, maybe not all the way to Cheney. But still absurd.

Now we’re in the middle of a national discussion and initiative about electronic health records (EHR), and what bothers me the most is that there has been no discussion of whether I ultimately control them. Note that EHRs are different from PHRs (Personal Health Records). Personal Health Records are the equivalent of a vaccination record — they are what your doctor gives you when you need to have evidence that you’ve done something. They can also include one’s own notes or resolutions or progress in certain areas, but PHRs are not official, and don’t represent one’s health history in any sort of official format.

Doc Searls has some ideas around this. Like me, he believes health records need to be centered on, and in the control of, the patient.

The patient needs to be the point of integration for his or her own data, and the point of origination about what gets done with it. Even if the patient’s primary care physician serves as a trusted originator of medical decisions, the patient needs to anchor the vector of his or her own care, for the simple reason that the patient is the one constant as he or she moves through various medical specialties and systems.

Doc even goes as far as to say that the patient should be the platform; that is, the origination point for all data and records flowing in and out to providers, insurers, hospitals, etc.

We don’t have the tools for that yet. Doc writes:

This requires classic VRM: tools of independence and engagement. That is, tools that enable the patient to be independent of any health care provider, yet better able to engage any provider.

In other words, while the answer needs to be systematic, it does not need to be A Big System (which I fear both BigCos and BigGovs whish to provide).

What concerns me the most is how that works for the poor, the ill, and the elderly, who do not have the same comfort level with electronic records as my generations and generations after me.

I see Doc’s answer as the best one, at least in theory. It’s how to put it into practice that boggles the mind. Are records stored in the cloud, released by the individual as requested? Is a patient’s entire history released, or only that which is relevant to the need? Who determines the need? What safeguards will exist to ensure that the records are seen only by those who the patient authorizes?

There are many more questions than answers. The good news: we are living in an age where data is being moved around in real time with regularity, discussions are unfolding and sparking innovation, and where development is growing at breakneck pace.

What we need isn’t here yet, but it will be, provided we can push past the usual politics and get to something that works.

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