Declaration of Health Data Rights

A great thing is being announced as I write this: a declaration of health data rights. On the surface it's simple and seems not controversial:

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A Declaration of Health Data Rights

In an era when technology is allowing personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

1. Have the right to our own health data
   
   
2. Have the right to know the source of each health data element
   
   
3. 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
   
   
4. 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.

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Seems obvious, right? In reality, it can be difficult to get your data, especially if you want it promptly because you're in trouble.

Current regulations require that you be given your records on request, but they can take up to two months to do so, and they can charge various amounts. One woman I know, whose husband died of Stage IV kidney cancer last week, was charged 73 cents a page (the records contained numerous mistakes and unfilled orders), and in Texas they can charge $37 for the first ten pages. If you've ever been under financial stress from medical hardship, you know what a grotesque thing that is to do to a patient's family.

On top of that, in some states (e.g. Virginia), laws prevent you from getting the results of your own lab tests; the law says the data can only be given to the doctor who ordered it. (I can only guess who wrote THAT law.) In a timely coincidence, today this article appeared in Archives of Internal Medicine: Patients Often Not Told About Abnormal Test Results, including this:

The failure of doctors and medical facilities to follow-up and give people test results is "relatively common," the researchers wrote, even when the results are abnormal and potentially troublesome, and affects one of every 14 tests."

All of this reflects an assumption, unspoken or not, that you have no real right to your data, and you're putting them out by requesting it. I disagree.

In endorsing this declaration, tonight I wrote:

These rights are as inalienable as the right to life itself.

Whose life depends on the data's accuracy, its availability?

Whose data is it, anyway?

For more information including the list of endorsing organizations, see HealthDataRights.org. To endorse it yourself, click the big orange "endorse this" button or just click here. To see the 800+ endorsements so far, click here.