Monday, December 14, 2009

Give Me My Health Data

Today I have been reading a couple of great blog posts that nicely complement each other. The first was from Gilles Frydman (@gfry) over on "2010: The year of Open Streams and Fax Machines" Gilles makes a number of great points and pulls some fascinating quotes from Adam Bosworth at Keas. Go and read the article - Now!

The second article was from one of my favorite firestarters - Jen McCabe  (@jensmcCabe)at ContagionHealth: "Why Programming Microchoice and Microcontrol in the Healthcare system Will Lead to the Equivalent of the Microprocessing Revolution." The title may be a mouthful but the article is a "must read."  There is so much packed in to Jen's post. The bottom line is that we (each of us) already exercises control in our own lives through the microchoices we make every day, many times a day. In the healthcare system today our primary mechanism to exercise control over our own destiny is the "null decision." We can choose not to take medication, or refuse a surgery. All very negative, but still a form of control we can exercise. 

The revolution coming in healthcare will be when we each choose to engage in our own health.

In Gilles' article he refers to the Declaration of Health Data Rights. If you haven't signed this  go and do it right now. It is a simple thing to do and can take less than a minute. It is an example of a positive microchoice you can make in taking control of your own health.

I have recently had to find a new doctor and dentist. Always a fun process that reaffirms the primitive tools available to healthcare consumers. It also confirms Gilles' point that the Healthcare system is wedded to paper. However, there is an opportunity here:

When you sign up at a healthcare provider you typically receive a "Notice of Privacy Practices" document that tells you how they are going to use your health information. There is often a section like this one:

Your Authorization: In addition to our use of your health information for treatment, payment or healthcare operations, you may give us written authorization to use your health information or to disclose it to anyone for any purpose. If you give us a authorization, you may revoke it in writing at any time. Your revocation will not affect any use or disclosures permitted by your authorization while it was in effect. Unless you give us a written authorization, we cannot use or disclose your health information for any reason except those described in this notice.

Let's use this clause to free our health data! To this end, I have drafted a crude counter document. After all, if a HealthCare provider is going to bombard us with documents to sign let's give them something back in return! 

Here is the Google Doc - Authorization to Disclose Health Information - does one of our Health Privacy Lawyers want to come up with a better document? I am open to improvements. Think of this as Health Data Rights in practice.

Let's make it clear that we expect the information from our Doctor visits and lab results to be uploaded to our Personal Health Record. So when you go to the Doctor's office take along two copies of the Authorization document. Get them to complete the form and provide you with a copy. You can then use a platform like or Google Health to grant the Doctor's office access to update your Health Record.

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