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:
http://adambosworth.net
http://blog.patientslikeme.com
http://www.drgreene.com
http://www.thehealthcareblog.com
http://blogs.msdn.com/familyhealthguy
http://e-patients.net
http://diabetesmine.com
http://2ohreally.com
http://www.huffingtonpost.com
http://blogs.technet.com/neupertonhealth
http://www.kibbeandklepper.blogspot.com
http://www.healthcommentary.org
http://www.wellsphere.com
http://www.IxCenterBlog.org
| June 22nd, 2009 at 9:51 pm
Excellent post Alan. You leave me to shame
| June 23rd, 2009 at 11:20 am
I remember when you couldn’t get your eye prescription to take to another place to get your contacts. The outrage?!! Don’t I have a right to know what my prescription is and take it where I feel I will be best served?
I have watched Kaiser Health go from a place where healthcare was by some standards - sub-standard, to having more and more of my medical records available online. My test results are online, my appointment notes and recommendations are online. One of the results is that it empowered me to know: What do the numbers MEAN for a Total Blood Count? Is my range of “normal” different from the lab’s “range of normal.” Who decides that? The lab? The doctor? My body?
Then I watch my husband struggle with a different health care provider, where nothing is coordinated, where his records are kept secret when his work changes health plans, which forces him to go through the entire system again.
I think empowering ourselves to take responsibility for our health will help us control these health care costs. It starts by having access to your medical records.
Bravo Dr. Greene. You have once again shown us the pioneering way to health care. You are a blessing.
| June 23rd, 2009 at 11:35 am
I would love to see the day where I own all of my health data. What if I want one or more opinions of blood results? Or MRI scans? I can see a day where web based business will offer to get results from multiple experts in those fields for a fixed price. Maybe even compete online to take care of any issues found.
As Web 2.0 took root and transformed the way humans interact and do business online, I can see a similar genesis in the medical arena coming fast: Medicine 2.0.
Now give me the damn keys!
| June 23rd, 2009 at 3:24 pm
When my mom’s cancer took a turn, we looked around for clinical trials. Finding the right one was a lot easier than getting the medical information to see if she was a fit! Papa had to beg, plead, follow up and gripe until he was allowed to share the records. It’s a fight that we shouldn’t have to face.
On behalf of the patients who’ve been worn down with these battles, I thank you and your team’s efforts to take away these barriers to better health care.
| June 23rd, 2009 at 4:54 pm
I couldn’t agree more! Excellent post.
| June 24th, 2009 at 11:58 am
I agree that everyone should have access to their health data, with some stipulations.
When Charlet turns 16 she’s not going to be handed the keys to the car blindly and set free. There is a lot of education, practice, guided learning that comes with the drivers license.
I think that having access to our health data is only a piece of the puzzle. What does it mean that someone’s potassium is 4.5? Is that good, bad, should they be worried? If everything going to be ok?
Along with the raw data people need information, not just what is the normal range, but what do the numbers really mean? Now that we have this information what do we do with it and how does it impact us? I believe that is it achievable, people decide how much insulin they need based on their blood sugar level everyday because they’ve been taught how. When that empowerment happens real change in the end outcome happens.
I could go on all day, but I’ll stop for now.
| June 25th, 2009 at 11:38 am
Two things come to mind for me when I read this. 1) I once wanted prescription glasses from an online retailer. They, of course, needed my optical prescription. I called my eye doctor, and they tried to refuse me! I believe it’s because they also sell glasses. I responded, “I’m sorry, but I believe that’s part of my medical record and therefore the information is legally mine. What are you going to do about it?” She flustered around a bit before saying she’d mail it to me. 2) Both of my children are special needs. Between the various specialists, therapists, pediatrician, as well as school officials - I wish I could just keep all the information myself. The process of signing over the ok to release the info, and then depending on the office administrators to actually SEND the info is obnoxious, and costs me time in treating my sons. I am not a child, thank you. Thanks for writing this post!
| June 25th, 2009 at 4:27 pm
[...] of the more famous names promoting the new site are Adam Bosworth, Esther Dyson, Dr. Alan Green, Peter Neupert, and Tim O’Reilly. Organizations backing the movement include Microsoft, [...]
| June 29th, 2009 at 1:26 am
[...] join us in supporting this mission. Read Dr. Greene’s blog post, the article from the Boston Globe or the blog post on [...]
| July 2nd, 2009 at 1:19 pm
[...] Greene is proud of his work on the Declaration of Health Data Rights. The movement has started dialogs in the media and in the blogosphere, and we’re confident [...]
| August 25th, 2009 at 12:09 pm
My son was involved in double-blind studies of a vaccine that we know suspect was the cause of his early health problems. But we can’t confirm or deny this because we are not allowed to see the results of his study. What a shame, I’ll never again participate unless I can have results of the study, in my health care file, that I personally can get my hands on.
| September 11th, 2009 at 9:50 am
[...] with whom I’m proud to share the recognition. Many of them support the idea behind the Declaration of Health Data Rights, which proposes that patients should be engaged, knowledgeable participants in their own healthcare [...]