Health Data Rights – Facilitating Personal Responsibility
My colleague, Alan Greene, has been in the lead with a group of professionals putting forth a declaration of health data rights and, as founder of eDoc, I am completely in support of it. He points out that more than 7 percent of abnormal tests results fall through the cracks, according to a study released today in the Archives of Internal Medicine. According to Alan, as quoted today in his blog: “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. 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….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…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 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…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.”
Thanks, Alan, for stating this so well. I couldn’t do it better than you, so thanks for allowing me to quote you!
*This blog post was originally published at eDocAmerica*
What is missing is the definition of “health data”. Is it a diagnosis or just lab test values? Is it only when it comes from a health provider with an established patient-provider relationship, or can it be when it comes from anyone?
I make this more timely. Is the cause of death for Michael Jackson “health data?” If so, then according to this first draft of the Declaration, he (or his estate) has sole providence over that info, and all the news speculation violates his rights. I think the way it is written currently, it is too broad and could encompass any conversation about another's health.
Rather than an all-out “Sign This Now!” campaign, how about one which strives to develop the *best* Declaration – one that is actually usable and is more meaningful?
What is missing is the definition of “health data”. Is it a diagnosis or just lab test values? Is it only when it comes from a health provider with an established patient-provider relationship, or can it be when it comes from anyone?
I make this more timely. Is the cause of death for Michael Jackson “health data?” If so, then according to this first draft of the Declaration, he (or his estate) has sole providence over that info, and all the news speculation violates his rights. I think the way it is written currently, it is too broad and could encompass any conversation about another's health.
Rather than an all-out “Sign This Now!” campaign, how about one which strives to develop the *best* Declaration – one that is actually usable and is more meaningful?