Sunday, April 25, 2010

Should Patients have access to their Data? Building on the #decisiontree discussion

I recently came across this question in a discussion group on LinkedIn. The question came from a blog post at

Think about the question for a minute. "Should Patients have access to THEIR data."

Would we think it strange if the banking industry asked "Should customers have access to their money?"

This goes to the heart of the challenges in Health Care. How can patients be engaged if they DON'T have access to their data.  The response I posted on the LinkedIn group went like this:

The question gets to the heart of the problem in Health Care. 

There is no data without the patient. It is their data. 

In business would we pay consultants to come in to our organization, hand them lots of proprietary information. Let them dig around and then let them keep the data and just tell us "Your business is okay" or "you need to implement this solution" and then they send you an invoice for you to pay. 

Most consulting contracts stipulate that the work done by consultants is the property of the company hiring them. Why isn't this the case with Health Care?

If we put our faith in Health Information Exchanges we will fail. We have to recognize that the patient is the true integrator. It is just that we haven't equipped them with the tools to fulfill that Integrator role in an easy, secure but transparent manner. 

Think about it - If you are on vacation or on business abroad and have a medical incident. You are the de facto integrator of health information. 

Until we put the patient at the center and give them ownership of their data we will continue to confront massive complexity in health care driven out of the need to capture consent and provide accountability for what is done with patient data.

Building on the discussions at the #decisiontree event on Friday at the Pew Research Center - The fact that Patients can demand access to their data is the starting point for change. HIPAA rules largely become irrelevant when it is the patient who is deciding what to share and who to share with. This concept is at the core of the success of sites like CureTogether and PatientsLikeMe

Tom Goetz the author of The Decision Tree: Taking Control of Your Health in the New Era of Personalized Medicine. Made a profound point in his discussion with Susannah Fox. "Health Data is valuable - It is currency."

When you realize that Health Data is currency and has real value then Patients need to start demanding their data. They have leverage. They can trade their business for their data. We should ask our doctor is they will send us our Health Records after every visit and every test.

When we, as patients, start aggregating our encounter data we will see tools emerge that help us analyze and interpret the data, making it more valuable. We will be able to access our data wherever we are, not just in our local hospital or health system.

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