Government leaders spoke about the importance of empowering communities and patients through public health data as well as the need to ensure that health information is protected during Health Datapalooza this week.
In general, when it comes to data acceptance "patients are ahead of the game," said Tim Kelsey, national director for patients and information for the U.K.'s National Health Service. Patients are by and large ready, particularly once they have a medical condition, to share their data and work with other patients with similar conditions, he added.
"[Data] has to be part of how consumers and patients think about their care experience," added Patrick Conway, chief medical officer at the Centers for Medicare & Medicaid Services. "We're working to enable patients to have their data through things like APIs to make sure that information is accessible."
For the Health and Human Services Department, it's all about not just giving patients' information about themselves day-to-day, but also a long picture of their health, HHS Acting Assistant Secretary and National Coordinator for Health IT Karen DeSalvo, said. She also touched on a new initiative between HHS and CVS to open up information on preventative services to consumers.
England has made strides in making data available to the community, Kelsey added. As of April, every citizen in the country is able to get online access to their primary care record through a set of APIs, he said.
However, there are challenges when it comes to making data available and sharing it. DeSalvo also touched on the issue currently troubling the industry--data and information blocking.
"Consumers feel their data blocked, doctors feel it blocked, hospitals, payers … and it happens for lots of reasons," DeSalvo said. She pointed to the ONC's recent report to Congress on data blocking, which defines examples of what information blocking looks like and what is being done at the federal level to stop data blocking. Data blocking occurs "when persons or entities knowingly and unreasonably interfere with the exchange or use of electronic health information," the report says. However, it adds that "many actions that prevent information from being exchanged may be inadvertent."
DeSalvo said one major push by the government will be to make sure HIPAA is not used as "an excuse or a misunderstanding as to why consumers cannot have access to their health information."
Todd Park, tech adviser to the Obama administration and former White House CTO, also touched on interoperability of health data between the Department of Defense and the Department of Veterans Affairs (VA).
Fifty percent of care delivered to veterans is done outside the DoD and VA systems, he said. "It's incredibly important not to think about the interoperability issues as DoD-VA," Park said. "It's DoD-VA-private sector. That is a key mission."
He added that there is "no magic formula or silver bullet" to full interoperability of data exchange. "You have to keep attacking and keep persevering … until you actually get where you want to go," he said.