Health Data Bill-of-Rights endorsed by DataPortability Project

DataPortability officially endorses the Health Data Bill of Rights.  There is, in my opinion, one key item missing from the Health Data Bill of Rights: Ownership.  People should not just have the "right to our own health data" but the OWNERSHIP of our Health Data.  Only with ownership explicitly given to the individual can the Health Data Bill of Rights have any real meaning.

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In an era when technology allows personal health information to be more easily stored, updated, accessed, and exchanged, the following rights should be self-evident and inalienable. We the people:

• Have the right to our own health data


• Have the right to know the source of each data element


• Have the right to take complete possession of a complete copy of your individual health data, without delay, at minimal or no cost; if data exists in computable form, they must be made available in that form


• Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights

Who owns my medical (identity) records?

In the U.S.A. the "healthcare reform debate is raging in our congress and on main street. What is missing is intelligent conversation around how the Laws of Identity should be applied to medical records/health records. Maybe I could recoup some of my out-of-pocket costs for healthcare if I could charge the hospital or provider when they sell MY records for research. What about my health insurance provider and all the claims data they have on me.

An interesting point, and one lost on all in the media, is that the debate is really about health insurance costs and not healthcare itself. Sure there is noise and dollars being thrown to digital medical records but no one seems to be even talking about the endless cost increases from providers, hospitals, and diagnostic testing. I have personally seen around a 45% increase in office visit fees from my family physician in the last two years. My health insurance costs rose only about 12% in that same time period. So, where's the problem? We can't place the blame entirely on insurance companies, after all it is to their advantage to reduce medical costs not increase them.

Sorry for my digression into reality. I read, I think for the first time, in a mainstream news article something that has long been ignored in the U.S.A.'s debate on healthcare: Who owns an individuals medical records. The Dallas Morning news had a single paragraph in an article last week titled "Who really profits from digital medical records?".

"Data sharing confronts age-old assumptions that providers, not patients, own health records, which are valuable assets that can be used to obtain grants and market hospitals. It requires the government to decide what kinds of systems will improve care and how providers should use the systems to achieve that. "