Tuesday, February 03, 2015

#ONC2015 Voice of the Caregiver and disruptive consumer: Angela Kennedy. Data is critical for the patient.

Angela Kennedy talking about her journey after one of her daughters was diagnosed with Cystic Fibrosis.

“The Consumer is the center of care”

How do you get access to the right care? Lie or beg… should it have to be this way?

Doctor’s office was reluctant to release information (Pulminary Function Tests), despite signing a release.

Records were faxed to the wrong number. Asked for another copy. Faxed again but did not arrive at the hotel.

In contacting rural hospitals she found that records had been destroyed. Forced them to go back through claims data. A pain staking reconstruction.

“Why didn’t I ask for copy of a record after each visit.”

Records created using copy/paste copied errors forward.

As a family they focus on wellness. Trying not to be a helicopter mom. Encouraging Gracie to be in charge of her own health.

Interoperability is important. Data is critical.

Gracie is an informed and empowered patient.

HIPAA is standing in the way of our health.

How long do we have to put up with businesses standing in the way of our health?

[category News, Health]

[tag health cloud, blue button, ONC2015]

Mark Scrimshire
Health & Cloud Technology Consultant

Mark is available for challenging assignments at the intersection of Health and Technology using Big Data, Mobile and Cloud Technologies. If you need help to move, or create, your health applications in the cloud let’s talk.
Blog: http://2.healthca.mp/1b61Q7M
email: mark@ekivemark.com
Stay up-to-date: Twitter @ekivemark

I am currently HHS Entrepreneur-in-Residence working on an assignment to update BlueButton for Medicare Beneficiaries. The views expressed on this blog are my own.

I am also a Patient Engagement Advisor, CTO and Co-Founder to Medyear.com. Medyear is a powerful free tool that helps you collect, organize and securely share health information, however you want. Manage your own health records today.
Medyear: Less hassle. Better care.

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