This is a Job for Flower!

First post of 2010. Happy New Year, all! Oh, and enjoy reading the 500+ page Meaningful Use proposed rule [pdf] we got for New Years. More on that in a later post; in meantime, check out David Harlow's post on HealthBlawg.

Alan Viars (@aviars) wrote a post yesterday about his father's difficulties in getting access to his medical records when transferring from Hospital A to Hospital B. His father's POA had to essentially throw a fit just to get a copy of the records prior to open heart surgery at the receiving hospital, as they "don't normally do that." Oh, and his father learned that his EKG from a year ago showed evidence of a silent heart attack but no one ever told him.

Alan concludes:

Lessons for the Wise:

• When you have medical tests, YOU THE PATIENT, need to ask for the results. Get a copy. Make sure your physician has actually reviews your tests. Just because you didn’t hear anything, don’t assume everything is okay.
• If it’s possible, when you go to the hospital have someone by your side who cares about you and can advocate for you. If you’re lucky enough to have a nurse, physician, or other medically educated person to be your advocate, even better.
• Sadly, you may have to get angry in order to gain access to your medical records. Don’t let them tell you no. It’s YOUR data – all of it – and it’s your right to have a copy. Keep your own records.

This is a great example of what the Speak Flower movement is all about.

It's about getting access to your health information -- easily, quickly, automatically.

It's about allowing other authorized individuals or entities to access your health information -- easily, quickly, automatically.

It's about taking control of the health information that is yours -- easily, quickly, automatically.

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:

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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.

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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]