Home > Identity, Intention Economy, Personal, Privacy > Gimme My Damn Data – And Help Me Understand It!

Gimme My Damn Data – And Help Me Understand It!

I recently read a Computerworld article that discussed the reluctance of physicians to share patient data with the patients themselves.  The article referenced a survey conducted by Accenture and Harris Interactive that found of the 3,700 physicians asked, only 31% felt that patients should have access to their own healthcare records.

“It found that 82% of U.S. physicians want patients to update their electronic health records with information about themselves, but only 31% believe patients should have full access to that record; 65% believe patients should have only limited access. Four percent said patients should have no access at all.”

This can best be represented by the following graphic from the Computerworld article:

Accenture Survey

This is old school thinking and is akin to asking someone to “show me yours and I will ‘think’ about showing you mine” (but probably won’t).  How very one-sided.

When I first joined the Personal Data Ecosystem Consortium (PDEC), I did so because I believed that people should be allowed to take control of their own data.  To me, “personal data” was roughly defined as identity and PII data; this was largely due to my identity background.  But over the past year this has shifted towards healthcare data and while many of the same thoughts apply, the ROI on managing healthcare data can be much higher as it directly correlates to a person’s primary asset – their health.

Google Health, Microsoft HealthVault, CareZone – there is no shortage of applications designed to assist people in managing their healthcare data.  While some efforts have failed, others remain hopeful.  But as this survey demonstrates, there is still a long way to go to change the minds of those who are diagnosing and managing this data – the physicians, themselves.  If they could only understand that patients are uniquely capable of assisting in the management of their own healthcare; but in order to do so, they need the data (and they need to understand what it means).

Over the past couple of years we have been developing applications that utilize the Lifedash platform.  This allows our users to take control of their own data and selectively share it with others.  Our latest application is CareSync and it is directly focused on healthcare.  We are currently in a beta of the Web application and are piloting our Health Assistant services. Both of these offerings allow people to aggregate and manage their own healthcare in a collaborative environment but allows them to do it safely and securely. The feedback we have received from our participants has been overwhelmingly positive as people are losing faith in the healthcare system.  They either want to (or feel forced to) take an active role in managing their own (or family’s) healthcare but to do so, they need the data.

With the reluctance of most physicians to share it is challenging at best.  There are, however, techniques that you can use to obtain this information but it requires persistence (the word “nagging” comes to mind).  It should not be that way – after all, it is our data.

In the words of healthcare activist e-Patient Dave, just “give me my damn data!”  Or as I would add, just “give me my damn data, help me to understand what you just gave me, and tell me how I compare to others in my situation!”

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