Advocates of greater patient access to health data are using Mother’s Day as an opportunity to encourage consumer to demand copies of their own health data by launching an awareness drive and online petition.
“Mom is the health CEO in many families,” explained Lygeia Ricciardi, former director of the Office of Consumer eHealth in the Office of the National Coordinator for Health IT. Ricciardi is a leader of the effort, along with former Veterans Affairs CTO Peter Levin, former national health IT coordinator Dr. Farzad Mostashari and well-known patient advocate Regina Holliday.
While this comes on the heels of Mostashari calling for a “day of action” in response to a proposed weakening of Meaningful Use Stage 2 standards, Ricciardi, now a Washington, D.C.-based consultant, told MedCity News that the drive is “not explicitly about Meaningful Use.”
Instead, Ricciardi explained, “There’s a lot of people who need to participate in this process” of becoming more engaged in their own healthcare and that of their families.
“It’s not a reaction, it’s a statement,” added Levin.
To this end, the group has put up a petition at getmyhealthdata.org to, as the website reads, “send a message that people demand convenient, secure, online access to their health information.”
They want to educate as many people as possible about the fact that they have a right to receive electronic copies of their medical records and promote Blue Button, a format for downloading patient data that Levin helped originate within the federal government. Blue Button has since moved beyond the government, and Levin runs Amida Technology Solutions, a Washington-based developer of Blue Button apps.
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Ricciardi noted that there is an “awareness gap.” Although people have expressed interest in accessing their records, they often do not know that the technology exists to make it easy for them to do so, she explained.
“We are creating a positive and affirming movement of raising awareness … and demonstrating to commercial and regulatory stakeholders that we are serious,” Levin said. “We mean it when we say that restricting access [to personal health data] will not be tolerated anymore.”
Other signatories of the drive include former White House CTO Aneesh Chopra, Craigslist founder Craig Newmark and Randy Watson, the very first user of Blue Button.
