In 60s FERPA law opened up access for students to see their records. Why do we still not have same in healthcare #tedmed

Ryan Panschadsaram at TEDMED 2013

At TEDMED this year, White House advisor Ryan Panchadsaram spoke about patient rights. He spoke about how all of us have the right to view our health records and take control of the content. Specifically he called out our rights to:

  • View our records
  • Correct mistakes
  • Decide who sees them
  • Request a copy

Panchadsaram said we’re all already afforded these rights under HIPAA.

scccrrrrreeeeecccchhhhh

HIPAA? The Dread Pirate Roberts of laws? The none shall pass of policies? The Great Wall of HCSM?

Yes, that HIPAA.

The Health Insurance Portability and Accountability Act has been manifest into the greatest red herring the world has ever seen.

For years we’ve all —me included —blamed HIPAA for various reasons our eHealth, mHealth, and HCSM dreams have failed to take flight. Oh, doctors can’t engage with patients online because if HIPAA (Actually, to fairly represent most of the objections, I should probably misspell it HIPPA).

Panchadsaram’s point is spot on. HIPAA is not a limiter, it’s an empowerment tool.

And if we, as digital and social health advocates, are going to make headway, we’re going to have to reframe our arguments, or drop them all together.

If we stop thinking about HIPAA as the the barrier, what then? We might also think differently about the whole problem.

How might we reframe our thinking?

Maybe it’s not about getting your doctor to tweet with you. Maybe instead its about helping the traditional medical establishment (ah-hum, I count myself in that lot) understand that these tools exist, and patients use them to discover expertise and new connections.

Maybe we shouldn’t expect hospital Facebook pages to reply to every patient by saying: thank you, come see us again soon. Instead we should be driving them to post how someone who sees Panchadsaram’s video can get easy online access to their own records.

Wherever we do, let’s stop blaming and start solving. Action conquers fear!

You can watch Ryan Panchadsaram’s talk below or on the TEDMED site. Ryan is also on Twitter. Here is the Office of Civial Rights letter he mentions in the talk.