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Tag: Data Rights

Why I Tattooed My Health Data Over My Heart | WTF Health with Casey Quinlan

WTF Health – ‘What’s the Future’ Health? is a new interview series about the future of the health industry and how we love to hate WTF is wrong with it right now. Can’t get enough? Check out more interviews at www.wtf.health

How can patients help usher in a better future for healthcare? Start speaking up. LOUDLY.

In this WTF Health interview, meet one of health’s most outspoken patient advocates, Twitter voices (@mightycasey) and podcasters, Casey Quinlan of Mighty Casey Media, who talks about her patient journey as a cancer survivor — and why the awful experience led her to tattoo a QR code linking to her electronic medical record to her chest.

Casey’s ‘physical political protest’ is tied to her passionate views about the lack of data liquidity in healthcare and how patients suffer as a result. She’s launching a new “If-You’re-Selling-My-Health-Data-Cut-Me-In” Movement and weighs in on why more patients aren’t clamoring after their health data to push real change in the healthcare system.

Filmed at Health Datapalooza in Washington DC, April 2018.  

Tool Kit: Why Portals Don’t Work Very Well

In it’s broadest definition, a portal is a doorway from one place to another.  On the internet, a portal is a site that has links to other sites.  In health care IT, the term refers to a feature of an electronic medical record that gives patients the ability to see parts of their medical record.

In each of these definitions there are two important things that are consistent:

1. To access what’s on the other side, a person must find the portal.

2. What is on the other side of the portal is not controlled by the person using it.

This is very important in the area of my concern: health care IT.  Our old friend “Meaningful Use” includes the requirement that the EMR system must “Provide patients the ability to view online, download, and transmit their health information.”

In case you’ve forgotten (deliberately or not), “Meaningful Use” is a program to encourage use of EMR by doctors, paying them real cash money if they meet the prescribed requirements.  The main way EMR vendors accomplish this provision is through the use of a “patient portal.”

So are portals the answer to patient engagement via online tools?  Are they the answer to e-Patient Dave’s demand to “Gimme My Damn Data?” I don’t think so.  They may be a step in the right direction, giving people some of the information they need, but there is still a wide gulf between giving someone a cup of water and ending a drought.

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