As consumers gain greater access to their electronic health records, concerns are growing about how to expand data access while preserving privacy and data responsibility.
Lana Moriarty, director of Consumer eHealth at the Office of the National Coordinator for Health Information Technology, discussed the proliferation of consumer health data Thursday at the Medical Center. She highlighted the Department of Health and Human Services’ Blue Button Initiative.
The program, which was launched in 2010 and was expanded across the country in 2012, encourages healthcare providers to allow consumers access to their electronic health records. Moriarty also discussed the concerns that have arisen from the expansion of electronic health records and talked about the future of health data.
“Our vision is to empower each individual to actively manage their health and partner in their health care through secure access to information and interoperable technology,” Moriarty said.
There is a rapidly increasing amount of electronic information about patients, Moriarty said. Most patients, however, do not currently have access to their medical records or other medical information about themselves. The Blue Button Initiative is an attempt to change that, she explained.
“Our first goal is to increase consumers' electronic access to their own health information,” Moriarty said. “Health information is not always available when and where it’s needed.”
Moriarty emphasized that the Blue Button program does not by itself give consumers access to records, but rather seeks to promote consumer access among healthcare providers.
“There's been a lot of confusion around the Blue Button Initiative. It's not a specific app but a symbol for consumers to get health info electronically,” she said.
The initiative is currently supported by groups such as the American Cancer Society and Livestrong, as well as companies such as Walgreens. The Veteran’s Administration has also joined the program, and more than one million veterans have accessed their records to date.
Although Moriarty said that her office was promoting increased access to health records, she also said that it was important to keep a bigger picture in mind with regards to health data. She described access as one “pillar” of electronic health, along with collaboration between consumers and healthcare providers, consumer control of records and “person centered” health care. Moriarty said that her office was promoting a number of different programs to advance these goals.
“We view our primary role as a catalyst and convener for advancing patient and family engagement,” she explained.
She also said that improved data literacy was a challenge for many health consumers, who are often older and less technologically savvy.
“We also want to focus on increasing consumers’ digital health literacy,” she said.
Attendees of the discussion appreciated the efforts of Moriarty and her office, and noted the opportunities that the proliferation of electronic health records have given to patients and healthcare providers.
“It was really interesting. There are lots of opportunities for patients to get empowered in their own care. It’s important for patients to take a role in this,” said Tanmay Gokhale, a sixth-year PhD student in biomedical engineering.
Others felt that there is still a large amount of work to be done with regards to electronic health data.
“The topics covered were very important but the government needs to take more leadership and action to make these a reality,” said Jonathan O'Donnell, a fourth-year medical student. “[She] didn’t really talk explicitly about how the government can enforce interoperability and data standards. The talk was a good overview, but I wish I would’ve heard more action.”
Claire Ballentine contributed reporting.
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