You Own Your Health Data

You “own” your own health data. That is clear if you generate it yourself, as self-trackers do. But even when others generate health data for you, you should have full access and “ownership” of it. They are only “borrowing” the data.

But not every health care provider makes it easy to get cheap access to the quantified data about your body. Therefore an explicit declaration that everyone should be legally ensured of that access is a good thing. It has no legal binding, but if enough people endorse it, and pledge to honor it, and make a point of patronizing those doctors and health providers that also honor it, then maybe it can become something to enforce.

Here is what such a declaration of health data rights might look like, as developed by a volunteer group of doctors, providers, professors, journalists, and bloggers. I was happy to see an early version and sign the endorsement. Consider this declaration a beta version. There are just four simple, hard to deny claims:

We all

  • Have the right to our own health data
  • Have the right to know the source of each health data element
  • 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
  • Have the right to share our health data with others as we see fit

The growing list of endorsements for these essential claims can be found at Health Data Rights. Add your signature if you think these rights to be fundamental for a 21 century health care system. You can also add your endorsement by sending a tweet to #myhealthdata.

Next step: If you are a health care provider who generates or captures health data of patients, and you honor these rights, then place a badge or announcement declaring you do. It will help shame others into getting up to speed.

180Px-Declaration Of Rights

This is is not quite the same thing as the handwritten copy of the Declaration of the Rights of Man and of the Citizen (1789)  but it is agreement with the older document’s aim to establish rights that will seem intuitive to later generations.

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9 Responses to You Own Your Health Data

  1. Robert Taylor says:

    Excuse me, but it seems quite and simply clear that if another person is being paid to create new health data about you, THEY OWN THAT DATA. You own your health. You own data you buy or pay access for if you didn’t do it yourself.
    If you want to retain ownership of health data created by a doctor, then obviously you’re attempting to establish some sort of collectivist health care system where you don’t just own your health data, but so would the doctor and anyone else that requests it.

    • Sorry Robert Taylor but the ‘doctor’ didn’t ‘create’ a representation of my health data without my consent, without being paid by my tax dollar, without the use of health facilities paid for by my government and without membership in a self-regulating profession that exists under law by virtue of my Parliament, without being educated in a University that serves the public good, or without interaction with and use of my body, the information I give about my body and his perceptions of of my body. My health data is MINE. And I resent it when the results of a blood test or an xray aren’t released directly to me. I resent the fact that Health IT surrounding eHR is solely focussed on managing the Pan-Canadian database for corporate and institutional interests. And I mourn the fact that legislators haven’t the vision to recognize that until our health data is legally attributed and accessible based on citizen preferences innovation in healthcare will continue to stall and medicine will never be the beautiful repository of life-giving flames but only that snake climbing up a cross…

      Karen

  2. Kevin Kelly says:

    @Robert Taylor: Well, despite what you say, it is not at all clear, which is why so many in the health field are compelled to write up the declaration. And yes, we are trying to make a collectivist health care system. By definition, that’s what a system is: collectivist. If you want purely individualised health care then you’ll do your own brain surgery. Otherwise you will have to rely on a collection/community of other experts.

  3. Kevin Kelly says:

    @Robert: If you hire a surveyor to survey your property, who owns the survey? You or the surveyor? I can’t think of any state where you would not own the survey. If you hire a radiologist to take an X-ray of your body, who owns the x-ray?

  4. Robert Taylor says:

    @Kevin, because we live in a semi-capitalist society, that’s precisely where the agreements come in. If you paid the doctor for a health check, and did not explicitly specify that the exchange of money was additionally for the data, then there is no agreement.
    If you paid him to produce the data, analyze and prescribe remedies, then that’s a different thing. I can’t remember going to the doctor’s office and asking for a copy of the data. A lot of it would make no sense to me.
    I’m sure for the right price, the doctor would sell it to me, regardless of laws. In a pure capitalist society (i.e. one without government intervention in markets OR HEALTH CARE) the data would most definitely be cheaper.
    I’m sorry Kevin, but a system is NOT collectivist necessarily. By trying to establish Human Rights, you are getting confused into once again lose your control over the very thing you’re trying to protect. What you should be signing petitions for is PROPERTY RIGHTS. I suggest you read up on the concept of property rights vs. human rights. You may write a lengthy informative post that helps others.

  5. Mark Hurst says:

    That third bullet in another form: there must be (a) an export function available that (b) exports the data to a non-proprietary format. Extra points for ASCII or a derivative (.csv etc.).

  6. Robert Taylor says:

    @kevin Or, you can ignore me and my valid points

  7. Rajiv Mehta says:

    Kevin,
    I completely agree with the spirit of this and endorsed it as soon as I heard about it.
    However, I am worried about some its practicality at this early stage in the development of QS tools. For a service provider (e.g. your dentist) or a consumer tool vendor (e.g. Nike+) to provide you with your data, in a way that is “easy” and “cheap” for you, requires some effort. At this early stage, where we are all still experimenting with what data to collect, how to collect it, how to analyze it, how to store it, etc., this effort is not trivial. On the whole, I would prefer that more energy be focused on innovation itself right now than on easy-and-cheap data accessibility.
    I fear that, right now, demand for such “Rights” may cause more harm by hampering innovation than it will benefit us. So, I hope that this endorsement effort is successful as a pointer of direction, but not as a check-list item “badge”.

  8. Gary Wolf says:

    The spirit of this declaration of rights is meant to call new rights into existence, not to catalog existing legal rights. Robert Taylor’s criticism might be easier to respond to if it were framed as an idea about how health data should handled. Is it a form of property? If so, who owns it? It is obviously wrong that doctors “create” the data in any straightforward way. Often doctors simply recommend that a test occurs, and then receive the results of the test; the actual test is performed by a third party, and paid for by the patient, or by the patient’s insurance. So if it is true that “you own the data you buy,” then in at least some of these cases you have at least as credible right to the data as does the doctor.
    But much of this strikes me as beside the point. The real issue is how we want to handle ownership of health data. One benefit of putting ownership of health data in the hands of patients is that they have a strong interest in maintaining it – that is, in insuring its accuracy.

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