Plans are coming together for “Data Independence Day,” when consumers demand electronic access to their health information, but organizers want to position it more as a movement than an event tied to the July 4 holiday.
At Health Datapalooza in Washington this week, ex-national health IT coordinator Dr. Farzad Mostashari led the unofficial kickoff with some fanfare. The difficulty in getting information is “a tax on everything we do,” said Mostashari, who now heads Aledade, a startup that supports physician-led Accountable Care Organizations.
Shortly after athenahealth COO Ed Park drew groans from the audience when he said patient engagement hasn’t taken off because people haven’t been asking for their data, Mostashari, who was on the same panel, said, “We’re going to change that.”
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As soon as the panel discussion ended, Mostashari took the stage with former White House CTO Aneesh Chopra and several open-data and consumer health advocates to announce Data Liberation Day. That’s when Health Datapalooza turned into a pep rally.
Mostashari called consumer access to their health records the “unlocker” to change healthcare for the better.
Within minutes, the former national health IT coordinator had grabbed an umbrella from a certain MedCity News reporter who had been sitting up front, then led a procession during a coffee break into the lobby of the Washington Marriott Wardman Park hotel to get attendees to pledge their support for the cause.
People are being encouraged to visit getmyhealthdata.org — a site that went up last month in time for Mother’s Day — to tweet to @GetMyHealthData and to contribute money, apps, technology skills or serve as “tracers” by asking for their records in the next few weeks to test how providers respond to data requests. “We want to get as much information from tracers by July 4” to show that there is demand, said one movement leader, Christine Bechtel, former vice president of the National Partnership for Women & Families, and still an advisor to that organization.
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In an interview with MedCity News, Bechtel, who chairs the consumer workgroup of the federal government’s Health IT Policy Committee, described GetMyHealthData an “informal collaboration among like-minded folks.” However, Mostashari said there are plans to set up a “Data Liberty Fund” and a 501(c)(3) nonprofit.
Every campaign runs on people, passion and MONEY! Willing to open your checkbooks? Donate to the Data Liberty Fund #hdpalooza #MyData
— GetMyHealthData (@GetMyHealthData) June 2, 2015
The project has three core strategies: give consumers tools to request their information; support innovation; and seek policy advancements.
The goal, according to Bechtel, is to make data access “ubiquitous” for patients. “When I leave my doctor’s office, I expect that I will receive a data feed.”
Another supporter who appeared on stage with Mostashari is Dr. Rebecca Coelius, director of health at Code for America Labs, a San Francisco-based open-source community focused on improving technology for government services.
Members of that community built the Vocatus Project, a newly posted Web app that generates medical records request forms for consumers. “The friction of asking for access was potentially a big block” to people doing so, Coelius said.
The site creates a form, then helps consumers find the fax number for whatever provider they want to send the request to. “It’s super low-tech,” Coelius said, “but it’s the most effective, efficient way to make the request.”
An automated follow-up system checks in with users to see what kind of information they receive back from hospitals, clinics, laboratories, imaging centers and other care providers, effectively making each user a tracer. “We want to find out how far off people are from Meaningful Use and HIPAA” requirements, Coelius said.
Eventually, this knowledge could help project leaders identify particularly egregious violators of consumer rights and file HIPAA complaints with the HHS Office for Civil Rights, but that is not in the immediate plans, according to Coelius. “It’s very much in alpha form,” she said. “We’re looking for early testers to request their records and provide feedback.”
