It’s an old adage that the easiest way to win a public debate is to personalize an issue.
Nowhere is this more true than in the “Get My Health Data Campaign”.
Before I start my dissection, I’d like to clear the surgical field. I’m a big believer in open access to healthcare data and have seen the major benefits that can arise when you are in possession of your data.
However, the language of the movement for open data simplifies a complex issue. When we speak possessively of “my” data and the “right” to ownership we enter murky waters.
In my perusal of the Universal Declaration of Human Rights, I could find no right to medical data beyond the generic statements of article 17;
- (1) Everyone has the right to own property alone as well as in association with others.
- (2) No one shall be arbitrarily deprived of his property.
So, it seems from a “rights” perespective the most we can say of our so called “right to data” is that it is a right to property. Personal property indeed, but at it’s core no different from my DNA, that can, in the state of New York, be collected from a discarded cup my lip has touched.
Here, then, lies the nub of the matter.
I, the patient, meet with my doctor and describe my condition. The doctor performs their differential diagnosis. I did not claim copyright over my data and did not sign a contract to purchase the doctor’s data.
This combined dataset is not mine any more than the saliva on my decorously discarded cup.
We can, of course, extend this chain of reasoning. Does the doctor have an agreement with their institution that gives them ownership? What of data generated outside the health system that the patient has chosen to visit? Who “owns” that, and who “owns” the aggregate dataset?
My distaste for the term “my” in relationship to healthcare data is manifest.
This rubic of personal ownership of health data is eased by provisions for access such as those extended by HIPAA, but access is a poor proxy for ownership.
I do not simply want to be able to access data about me, I want the right to perform the usual tasks of ownership; to disclose, to delete, to amend, and to create.
Being able to access data about “me” does not afford me the oft cited “right to be forgotten”. It does not provide me the rights to dictate who can see my data except in the broadest possible terms. It does not allow me to correct statements with which I do not agree.
Some will argue that we must take steps to arrive at such radical change. I respectfully disagree. The patient is literally dying on the table and mere bandages will not suffice.