July 4 is upon us, and with that also comes “Data Independence Day,” when consumers are supposed to start asking en masse for copies of their medical records, in hopes of demonstrating to providers, IT vendors and healthcare policy-makers that there truly is wide demand for such access.
Thursday, the same coalition of patient advocates and consumer groups that made a stir at Health Datapalooza a month ago officially launched the Get My Health Data campaign. Organizers have three goals: arm consumers with the knowledge and means to ask for and use their health information; promote apps and tools that allow people to access, store and use this data; and create a culture in which consumer access to health data becomes the norm.
“We want people to know that they do have a right to have their healthcare data,” said Sharon Terry, president and CEO of Genetic Alliance, a Washington-based group that has assembled a coalition of thousands of healthcare, academic, government and disease-specific organizations to improve the health of individuals, families and communities.
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“Our main thrust is making tools available” to consumers to meet these goals, Terry told MedCity News. The Get My Health Data site, which actually has been online since May, provides instructions on requesting health information and a list of consumer-facing personal health records that people can download. (Whether these PHRs actually connect to organizational electronic health records is another story, and a potential Achilles’ heel.)
It will be a long slog, Terry said, particularly when so many providers still ironically cite HIPAA in denying people copies of their data. “HIPAA is largely an excuse to cover their butts, when it’s really what allows people to have the access,” Terry said.
Despite some of the earlier rhetoric, Terry does not expect millions of people to call their doctors and hospitals in the next few days to ask for their records. “This is not going to be magic,” she said.
Still, Terry expects early requests to come from more than just high-profile advocates such as Regina Holliday and “E-Patient” Dave deBronkart, and include many people — particularly women — who just want to get better care for themselves or their loved ones.
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Terry said that the Get My Health Data movement likely will be present at an upcoming White House meeting of “Champions of Change” in precision medicine, though the Obama administration has not publicly announced details of that event, including the date. “Freeing this data will make a difference” in promoting precision medicine,” according to Terry.
Former White House CTO Todd Park, now a Silicon Valley-based special advisor to the president on technology issues is sympathetic to the cause, given that he appeared on stage with the Get My Health Data partners at Health Datapalooza. However, the administration, via the Department of Health and Human Services, did ignite the movement in April by proposing a rollback of Meaningful Use standards on patient engagement.
