Tuesday, November 24, 2009

Licensing One's Own Health Care Data

Paul Roemer at HealthcareITstrategies asked about the difference between a patient owning vs accessing their health care data.

To which I replied:
Paul, I'd like to see a model considered where the patient owns the data, and licenses it out to others, such as doctors, hospitals, and insurance companies. One could then imagine a situation where that data (including their genetic info), owned and licensed by the patient, might have a value. The patient could then do the following:
  • be paid licensing fees for access to their data (from Google or other marketing companies; and from insurance companies and Pharma, who would benefit from knowing this info)
  • grant access for free to their providers, spouse, etc
  • pay others to access their data in order to gain some benefit, such as analytics

This would change the whole discussion about health care, privacy, and costs.

Think about the incredible shifts and changes in the marketplace if such a revolution developed.

Not only would there be this "power to the people" shift in mindset, it would also create a huge change in the average consumer's approach to their own health. It would encourage them to pay attention to their data, and thus their health, in a manner similar to how people pay attention to their savings and checking accounts. It might even result in a reduction in health care costs. It would certainly create a more fluid marketplace.

How do we get there? (add comments/ideas)

[Edit: Dec 13- I'm linking to some of the great prior posts and items noted by the commenters.]
  • HealthBlawg: David Harlow's interview with law professor Marc Rodwin about idea of public ownership of de-identified health data. [Jul 2009]
  • Marc Rodwin's JAMA article, "The Case for Public Ownership of Patient Data". [Jul 2009]
  • Silona Bonewald's post about mutual data ownership. [Jun 2009]
  • Leo Kish asks: What if all applications, caregivers and patients were connected online? [Nov 2009]
  • Gregg Masters (@2healthguru) posts "I Will License or Lease My Health Info to Providers". [Mar 2009]
  • Steve Holcombe's piece on granular information ownership. [Aug 2008]


  1. Sound like Health data banking, where the patient is responsible for their data storage in a Health bank. They also pay for the storage.

    Jeff Brandt

  2. I strongly agree. I'd like to license out my data in open, anonymous, and semmi-anonymous modes. I agree this would create a more fluid marketplace and allow for tailored/personal health plans.

    We need an open source schema to represent it.

    I think Change:Healthcare might have some interesting insight on all this.

    -Alan Viars

  3. I like the idea in general, but I hope that this sort of a system wouldn't get in the way of the phenomenal benefits both to the patient at the system as a whole by the sharing of health information for collaboration among providers and health informatics studies. Patient data rights is the nut that needs to cracked in our whole nationwide health care information conundrum. If the right rights leads to wider adoption of HIT, we'll all benefit.


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  6. It certainly makes total sense. If a consumer (patient) can be responsible for his data in other fields of life like property ownership, finance etc. why can't he be accountable for his health data also? Moreover, this new concept will address the issue of reducing errors because of patients not knowing the medicines they are taking, well highlighted on this link, http://bit.ly/6oi99h

    We need to introduce the 'technology package' which will facilitate the adoption of this model.


  7. Agree with thrust of patient 'ownership' of the data, and opportunities for downstream licensing. See:


  8. I added links to some of the resources mentioned at the bottom of the post.