Future Now
The IFTF Blog
Some Thoughts, and a Question, on the Declaration of Health Data Rights
I'm a bit late to this, but a bunch of bloggers, self-trackers and companies have endorsed something called A Delcaration of Health Data Rights. The declaration includes four key points, that, "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
E-Patient Dave offers an explanation of how the declaration could improve patient rights by providing free access to data and test results:
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.
While I think the data declaration is an important first step toward expanding patient access to data, it leaves a lot of questions unanswered about long-term ownership. For example, in endorsing the position, 23andMe wrote:
At 23andMe, we believe it’s time for a research revolution, where the people involved — let’s no longer call them human subjects — can play a more active role and contribute more directly to studies of most interest to them and their families. And if any individual would like access to his or her data, he or she should be granted that request.
23andMe's "research revolution" involves, as they wrote, getting people to contribute their genomic and other data to research projects, and using the aggregated data to drive new research and innovation, which will likely be the next frontier in privacy and data ownership debates. Which is not a criticism of the declaration--again, I personally think this is a great first step toward giving people more control over their personal health information. But in the long-run, I expect much larger and trickier questions to center on questions about control over the products and innovations built on top of aggregated patient data.