ONC’s Don Rucker: ‘Nonsense’ to think patients can’t handle or understand their data
The new push for easier patient access to their health data from CMS will require some work on the part of the Office of National Coordinator for Health IT (ONC), with the agency’s leaders not being shy about supporting its patient-centric goals in a briefing with reporters at HIMSS18 in Las Vegas.
When asked by HealthExec what role ONC would have in implementing the new My HealthE Data initiative, ONC chief Don Rucker, MD, said there’s been “a pretty tight synergy” between his agency and CMS on the priorities that CMS Administrator Seema Verma, MPH, laid out in her speech at HIMSS. Giving patients greater control, Rucker said, will mean tackling long-known privacy and security challenges but will also push interoperability past a narrow “provider-to-provider” interaction which only involves patients when they request their records.
Rucker said he’s heard from physicians who oppose these initiatives by arguing patients won’t understand the data they’re given—a view he categorically rejected.
“I think that’s just nonsense,” Rucker said. “I think that we all have an ability to abstract complex things. The person in question was wearing a high-tech, electronic watch and I pointed out, ‘You don’t know what’s inside that watch, yet it works for you.’”
The point of one initiative Verma announced, Medicare Blue Button 2.0, is to put the information into a digestible form for patients in a format where “you can do more computing on it.”
The question of whether it’s worthwhile to expand patient access to their data, however, appears to be settled in minds of ONC.
“It’s a paternalistic attitude on the parts of doctors like me to say patients don’t want the data or aren’t ready for it,” said deputy national coordinator Jon White, MD. “I will not question the fact that some patients don’t necessarily want their data, who may just want to show up in the office and get the care they need. There’s a lot of folks who are ready, eager and frankly, really irritated—and irritated is not the word I’d use in non-polite company—that they can’t get their data.”
The ONC leaders did emphasize the data has to be understandable, like avoiding the acronym-heavy lingo physicians and health policy wonks throw out in conversation. Rucker said physicians would be surprised at how much patients can decipher, especially when they’ve spent years dealing with a complex condition.
The only non-physician on the ONC panel, principal deputy national coordinator Genevieve Morris, said as someone with hypothyroidism and with a history of it in her family, she understands her lab results and can confidently discuss adjusting her medication with her physicians based on those tests. Other patients, she guessed, would have similar expertise about their own health.
“I think there are a lot of patients who, when they need it, want access to their data,” Morris said. “If you’re not sick, you obviously don’t need it, but I think once you have a medical issue and you need that data and you want to maybe do some Googling to try and understand what you have—and there’s nothing wrong with that as long as you’re wise at what you look at—you need your data to do that.”
John joined TriMed in 2016, focusing on healthcare policy and regulation. After graduating from Columbia College Chicago, he worked at FM News Chicago and Rivet News Radio, and worked on the state government and politics beat for the Illinois Radio Network. Outside of work, you may find him adding to his never-ending graphic novel collection.