During a briefing with health IT trade press at HIMSS18 in Las Vegas, senior officials at the Office of the National Coordinator for Health IT (ONC) emphasized giving patients more access to their data and putting them in greater control of their healthcare.
The comments on Wednesday from ONC’s top leaders mirrored what CMS (Centers for Medicare & Medicaid Services) Administrator Seema Verma stressed in her keynote yesterday, in which she announced the launch of two initiatives, aimed at empowering patients around a common aim—giving every American control of their medical data. Don Rucker, M.D., national coordinator for health IT at ONC, and his colleagues, candidly told health IT press on Wednesday that while there are always exceptions, most patients are ready, willing and eager to have more control over their data, and become quite irritated when they can’t access it.
“[People] have said that patients don’t [understand] their data, and then ask, why is [the government] doing this?” said Rucker. “But I think that’s nonsense. We all have the ability to extract something complex and we have tools in society to [help],” he said.
Indeed, yesterday Verma publicized the launch of CMS’ MyHealthEData campaign as well as the launch of Medicare’s Blue Button 2.0. Rucker, when asked to expand on Blue Button 2.0—as the original Blue Button initiative was an ONC-promoted project to allow patients to download their health data—said that “The whole point of 2.0 is to put data in a format so you can do further computing on it.” He attested that “patients are smarter than you [would think]” and that many folks “would be amazed" with what patients can comprehend. He did add that if he were to “dump an unvarnished C-CDA [consolidated clinical document architecture] with an ICU stay embedded in it, onto a patient, “that’s a huge payload.”
But to this point, Rucker pointed to tech startups and companies like Apple as firms that could develop tools to allow for easier computability of data. Verma noted in her keynote that while the original Blue Button initiative does make some Medicare claims data available, it’s in Excel or PDF formats that are not easily digestible—a point Rucker agreed with. Said the National Coordinator, “Instead of having data in forms that are impossible [to ingest], 2.0 is an application programming interface, or API [that uses the HL7 FHIR standard], and that will allow [the data] to be readily computable.
Rucker added that “Computers have memory, and that memory will be used to have dialogue with patients over time. We have a transactional healthcare system, but with memory over time, the entire nature of patient engagement will change. That part will be profoundly transforming,” he said. He further noted that essentially all consumer apps are “sticky”—and “they know who you are, know stuff about you and they tailor your experience.” But, attested Rucker, “We don’t have that in healthcare; we’re filling out clipboards with our past medication and allergy history [when we go to the doctor’s office.] We have EHRs [electronic health records], but not much else,” he said.
John Fleming, M.D., deputy assistant secretary for health technology reform, was also part of the media briefing, and he touched on the issue of patient control as well. He reflected back on his years as a practicing physician, noting, “I have a very longitude perspective of patient and provider attitudes about their records, and for many years well into the 1980s, patients completely relied on doctors and trusted us without reservation. And I actually grew uncomfortable with that since doctors [make mistakes, too]. It’s obvious that patients and providers should become a team, and the only way for that to happen is to share data,” said Fleming.
He brought up a personal anecdote, speaking about his grandson who has cystic fibrosis, but his mother, who is not a doctor and has no medical training, keeps up with the latest CF research, keeps in contact with her son’s doctors, tracks his data, and shares that with the clinicians. “The future will be one in which patients want their information. It should be made available to them in a form that can be ingested,” Fleming asserted.
Circling back on the Verma talk from the day prior, Rucker said that ONC and CMS are in “tight synergy” and are aligned with the same goals around interoperability, reducing clinician burden, and promoting a patient-centered healthcare system. Said Rucker, “We bring this package into the CMS process and we work with them extensively; we easily have a dozen meetings a week. The goal is to get information flowing to put patients in control.”
Speaking more broadly about healthcare market economics, Rucker said that while everyone talks about the rise of healthcare costs, it’s important not to forget that the “entire rise in healthcare costs was started when Medicare began in 1965.” He added, “We can go back to having patients shop for their care. That’s the goal— to empower patients in a market economy, [have them] shop for care, and have competition.”
Fleming, who noted that he was in Congress during the Obamacare debate, said that one-half of America sees the solution to healthcare’s issues as more government control and more regulations, while the other half sees the solution as having a consumer-oriented system, much like buying cars or groceries. “I think the solution is somewhere in between the two, and we need to solve that,” he contended. “Since 1965, the person receiving the care has not been the one who was shopping for it…We have to re-engage the consumer and we need to make pricing and value transparent. These are fundamental things to bring costs down,” he said.
Of course, a crucial key to making patient data more accessible is, as required by the 21st Century Cures Act, “the use of APIs without special effort,” which would allow one software program to exchange data with another and which also could allow apps to readily connect to EHRs.
“The data has to talk and has to get from point A to point B,” said Rucker. “It needs an interface and a network. [This is] the broader concept of open APIs without special effort. What’s being talked about here are the doorways, if you will, and the network is the hallway. These doorways [should] be available to everyone,” he said, adding, “Open APIs without special effort [represents] the ultimate tool for the democratization of our era. Open APIs without special effort can be worthless.”
