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 When they finally got a medical transfer they were sent with an out of date and incomplete medical record.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