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A Declaration of Health Data Rights
Jon Lebkowsky, 24 Jun 09
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The United States has the most expensive and sophisticated health care system in the world, yet to many it appears broken. While the debates about health care reform focus on costs and how they're managed, there are also problems with service delivery, or, you might say, with knowledge delivery. For example, a new study suggests that some patients often aren't told of abnormal test results. The impact of this opacity on individual lives can be devastating.

Last March, when Regina Holliday's husband Frederick was diagnosed with stage IV kidney cancer, the couple was, she says in her blog, "plunged into the nightmare that is modern medical care in the USA."

The more I talk to other people the more I hear the same story. "The doctor did not listen." "The nurse did not read the chart." "The hospital kicked us out because our insurance was running out." It goes on and on. I ask all these wonderful people what they did to right this injustice, and the response is the same. "I was too tired." "It was too hard." "I was so sad." "They just got away with with treating us this way."

At that point, Regina became a passionate medical rights advocate. "I may be only a mother, a wife, a sales girl, a teacher, an artist, and a caregiver," she wrote, "but I will effect change. I will give all my talent, my abilities, my energy, and my belief to helping us all."

Frederick Allen Holliday died on June 17. Regina, a muralist, is now working on "a series of murals depicting the need for clarity and transparency in medical records." She writes

I will let the anguish of us all pour out through me. I will be his voice. I will be your voice. We are all patients in the end. We should have the right to be treated with dignity and respect.

Inspired by Regina and others like her, a diverse group of citizens including physicians, researchers, entrepreneurs, technologists, writers, and health economists have created a Declaration of Health Data Rights which says that

We, the people:
  • Have the right to our own health data
  • Have the right to know the source of each health data element
  • Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form
  • Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

Why focus on the data? Patients have a right to know exactly what's going on with their bodies, and to be clear about the facts and the thinking behind medical decisions in their behalf. This isn't always, or even usually, happening. Patients are too often passive and uninformed observers of their own treatment.

This can change. A coalition of physicians, patients, and others from within many disciplines are fired up about the revolutionary potential to democratize medical knowledge and empower patients, allowing them to be partners in their treatment, peering with their physicians. This radical paradigm shift, powered by the Internet and social media, is about the power of information and the right of access.

Pediatrician Alan Greene, an instigator of the Declaration, notes that patients "already have a theoretical right to see their data," but "in practice it usually doesn't happen because of delays, financial barriers, and a paternalistic attitude that patient's won't benefit from their data – or that sharing it may even be dangerous." The supposed danger might be an extreme reaction to dire results, such as suicide. However, Greene says, "people have the right to make their own decision about when, where, and what kind of support to get."

I asked Greene if other countries are better about data transparency and sharing with patients. He answered that although some are better, it's generally a global problem. Though these standards have initiated in the U.S., raising awareness could help set a higher standard for health care around the world.

The Declaration of Health Data Rights is an important new driver for the participatory medicine movement (in the spirit of full disclosure, I am a cofounder and board member of the movement's new Journal of Participatory Medicine, though I am not working directly on the Declaration). It's a simple statement, but there's a lot of complexity behind it – see the FAQ for more background.

Photo credit: flickr/Fabian.Nikon, Creative Commons license.

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I think we're running into dangerous territory abusing the word "right" here. Access to your health data is not an "inalienable human right" and should not be treated as if it's on the same level. While I agree that you do have a right to do with your body as you see fit unless it harms another human being, I don't think extension of that right should be automatically extended to health data. It is after all something generated at cost to the hospital, and in the age of WebMD, the Wikipedia, and other avenues of finding out information about "doctor talk" on the internet, this cry for right-to-access to make informed decisions really becomes mute.

Posted by: FTLNewsFeed on 25 Jun 09

While it may be true that the hospital created the data, it is also true that I am paying for the tests! Or my proxies, such as insurance companies (again paid for by me!) or the government (paid for with my taxes!) The cost argument does not stand up to examination. This is information about my body, generated at my request, and paid for by me! Why shouldn't I have full access to it? Some other party's paternalism? Their condescending attitude? Who is more interested and motivated about my care then me? I should know what I am paying for.

Posted by: Cyrus on 26 Jun 09

FTLNewsFeed, I believe you are confused about what data is being discussed. Sure, the internet provides plenty of information about diseases/illnesses/symptoms/treatments, but it does not provide us with our own medical records. We (patients) want access to the data we supply and for which we pay (as Cyrus so aptly explained). I want access to any data that is being shared or may be shared with anyone/anyplace else, plus all data I generate as a patient (i.e. pertinent labs, imaging, and other results of testing). Thus, the point is not moot at all.

Posted by: Robin on 27 Jun 09

I wouldn't be so quick as to dismiss concerns over the danger of seeing raw data as paternalistic.

I have a close friend who went to an ER and while treated successfully - on the way out the doctor asked the patient to come back and pick up the written results of a
CT scan, as my friend did not have a doctor to whom a report could be sent.

When he returned to get the report several days later, he read that he might have cancer, and about three other frightening diagnoses.

Turns out that the doctor he then went to dismissed all the concerns in the radiologists report, but in the meantime he was a wreck for several weeks.

I know this is just an 'anecdote' and not data, but before we start establishing rights let's think this through a little more dispassionately.

We have to weigh the risks of too much vs too little data. One approach might be to set up a system not unlike what happens when people go in for HIV testing. A positive test usually requires counseling so people don't unnecessarily go off the deep end.

Posted by: Herb on 27 Jun 09

Herb, I think the danger is not in having too much data, but having too little understanding, too little contextual clarity. In the case you mention, I find myself wondering why the first doctor didn't take time to explain what would be on the report and what it could mean.

Posted by: Jon Lebkowsky on 27 Jun 09

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