Our Health Data Rights

Imagine sitting in a car, eager to get someplace, but not allowed to drive. You must wait for another adult to come with the keys. You hit redial on your mobile phone repeatedly trying to get an update on when they might come. You’re not sure when or if they will arrive. It’s exasperating.

When it comes to health, having our health data is like having keys to the car: we move from being passive passengers to being drivers of our health (and of our healthcare system). Instead of waiting for data that might never come (and more than 7 percent of abnormal tests results fall through the cracks, according to a study released today in the Archives of Internal Medicine), we can get the results ourselves. Whether we use this power to track our family’s medications, BMIs, lead levels, vaccines, or allergies, by being more actively engaged I believe we can make better health choices, reduce costs, reduce errors, and enjoy better health. We can steer toward where we want to go.

Too often, bureaucracy, old-thinking, or paternalistic concerns keep people from having their own health data or from having the courage to act on it. I believe this is about to change.

On June 22, 2009, we released a Declaration of Health Data Rights – a profound, simple statement that, among other things, we all have the right – the license – to take possession of a complete copy of our health data without delay and at minimal cost, in a computable form if our lab data or pharmacy records or growth charts or other health data exist in that form.

Thomas Jefferson taught that when the people are well-informed, they can be trusted to govern themselves. At the time, though, it was not true for slaves. Or for women. And in the 21st century, it’s still not true for patients. Having a copy of the health data that exists about us and our young children is an important step toward being well-informed. This doesn’t mean that we won’t value physicians and others who have devoted their lives to a study of health, but it does mean that we will engage with them in a new and more effective way.

Two months ago Michelle Obama drew gasps when she broke tradition and touched the Queen of England. Not touching the US President was also our tradition during the presidencies of George Washington and John Adams, a holdover from another era. People bowed to the President. On July 4, 1801, Thomas Jefferson changed that and began to shake hands with people as equals – with different roles and different expertise, but equals nonetheless. It’s time for us to stop bowing to doctors and healthcare systems and to shake hands as colleagues for health, colleagues with different roles and different expertise, but equals nonetheless. And one important type of handshake is the data handshake: data that is easily transferred from one person or one platform to another. Sharing data or the keys can feel scary.

I hear concerns from some doctors that patients shouldn’t have a set of keys: they won’t make safe drivers. And it would be dangerous, for instance, for patients to be able to get worrisome lab results or biopsy results without someone present to reassure them. As I’ve heard more than once, what if this led to suicidal behavior? Yes, I think it’s valuable to have support when getting bad news, but I also think the choice of whether to have support, when, and what kind belongs to the person getting the news. Our routine of keeping people in the dark until we are ready for them to get information is too a high price to pay.

What if people misinterpret or misuse their own health data in less extreme situations? No one has a greater interest in an individual’s health than that individual and their loved ones. Armed with up-to-date data, they are free to consult experts and other resources as they wish. Our health is our responsibility, and having our own data is essential to taking charge.

The Declaration of Health Rights is simple, clear, and self-evident – but I expect the implications of this Declaration will continue to unfold over the years to come as happened with Jefferson’s statement of democracy. One natural extension of this will be people’s ability to order lab tests for themselves. Of course, insurance will only pay for the tests if the situation warrants, but if your child has a sore throat and a fever, why shouldn’t you be able to order a strep test? Or if you’re a parent in your thirties or forties and have high cholesterol, why shouldn’t you be able to have your child’s cholesterol levels checked? We live in a country that allows people to smoke cigarettes and carry guns. Having our health data is far less dangerous and carries with it the possibility of great good. Let’s shake hands; let’s pick up our keys.

To learn more about the Declaration of Health Data Rights, click here.

To become a signer of the Declaration, click here.

Other blogs about Health Data Rights:


Published on: June 22, 2009
About the Author
Photo of Dr. Alan Greene
Dr. Greene is a practicing physician, author, national and international TEDx speaker, and global health advocate. He is a graduate of Princeton University and University of California San Francisco.
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