#TBOS @reginaholliday Thoughts on Patient Access and Social Media

Regina Holliday tells the moving story of the loss of her husband.

Regina, encouraged by her husband Fred, joined Facebook to help organize a child’s birthday party.
From Jan to March 2009 Fred’s condition deteriorated with bone breakages and multiple pain medications.

An Open MRI revealed metastasis that had spread everywhere.
Fred was hospitalized in 5 facilities in 11 weeks. He only had wifi access in 2 locations.
To get Fred’s medical record would cost 73 cents per page and 21 days to get a copy.

When they finally got a medical transfer they were sent with an out of date and incomplete medical record.

One reason for denying access to a medical record: “Patients aren’t educated enough to understand it”

“Twitter gave me access to a Doctor willing to tell me the truth”

Facebook as PHR – 10.7% of Facebook posts made by Fred Holliday were relevant to his kidney cancer.

Social Media and Art came together to promote patient access to their medical data.
@ReginaHolliday – Meaningful Use now demands patient access to their data in 3 days. An outcome of her advocacy at ONC.

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