String of Questions

I’ll admit I don’t have an answer to this question: We talk about “data ownership” related to data that has been collected and stored. Some argue it is the patient’s data, while others claim it belongs to the institution that collected it. But as we get more and more information flow among various organizations, and as data in aggregate becomes more available to researchers, will there be such a thing as ownership of “discovered knowledge?”

I suppose the answer to that depends upon whether or not the analysis of collected (anonymous) medical data remains an academic exercise. Cynically, I would say that it really depends on who paid for the research to be done. So the question here is, if a private enterprise analyzes data in such a way as to learn something completely new about how the body works, or what causes a disease, is the enterprise obligated to share its knowledge as a contribution to the greater good? Or can that knowledge be withheld while a unique drug or treatment is developed for profit? I’ve just been thinking about this one, as our ability to collect more and more data will have been provided as the result of a huge public investment in EHRs through HITECH and other health reform legislation.

-Rod Piechowski

Copyright © 2010, Rod Piechowski, Inc., Consulting

2 Comments »

  1. Kat Said,

    August 22, 2010 @ 12:55 am

    Well, as a consumer and a possible patient (at some time, though hopefully not…)
    I can say that “data ownership” is the very question that I am so worried about with regard to Electronic Health Records.
    I believe that it is I who unequivocally own my data. If it weren’t for me, there would be no such data. It’s that simple. I feel very strongly that the right to decide where it goes, who sees it, and for what reason, should be mine and mine alone. Let us not make the same mistakes with EHRs that we have with credit information. The possibilities for misuse and identity theft are rife. We MUST protect that data, and the fewer channels it goes through, the easier that will be.
    As for the collection of anonymous data- I believe the answer lies in a massive change in the way health care is conducted in the United States; with less emphasis on profit-at-any-cost, and more emphasis on the importance of a healthy public.

  2. Rod Piechowski Said,

    August 23, 2010 @ 9:00 am

    Kat,
    Thanks for your thoughts on this, and you bring up an important piece of the puzzle: the perceived value of EHRs to the general public. Lots of discussion occurs among those in the medical and technology professions, and too often those outside of these circles are an afterthought to the dialog. Your concerns have not gone unnoticed, and while there are efforts underway to address the ability to control the use of your data, the solutions could become cumbersome. Unless you know exactly who needs your data and why, it will be very difficult to select on an individual basis, where you approve of the sharing process. There must be an effective, yet simplified method to cover your choices. I hope you do see value however in the use of your anonymized data for research to improve overall quality in medicine.

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