Former ONC Coordinator Karen DeSalvo: A New World is Emerging with Consumer-Mediated Data Exchange

May 24, 2017
During a Bipartisan Policy Center event Tuesday, several health IT policy experts shared their thoughts on the role of government and the private sector in improving IT’s role in providing safer care as well as industry progress on interoperability.

During a Bipartisan Policy Center event tied to the release of a BPC report on improving health IT safety, several health IT policy experts shared their thoughts on the role of government and the private sector in improving IT’s role in providing safer care as well as industry progress on interoperability.

BPC is a Washington, D.C.-based think tank and, in its report, the organization called for greater private-public leadership, collaboration and a systems-based approach to improve patient safety and information technology.

Former National Coordinator Karen DeSalvo, M.D., who also served as Acting Assistant
Secretary for Health in the Obama Administration, and Andrew von Eschenbach, M.D., former commissioner for the U.S. Food and Drug Administration (FDA) and now president of Samaritan Health Initiatives, were on a panel discussion, moderated by former U.S. Senate Majority Leader Bill Frist, M.D., following the release of the BPC report and the panelists tackled the issue of how to improve health IT as well as the role consumers play in interoperability.

DeSalvo reflected on how the health IT landscape has dramatically changed in the years since the passage of the Health Information Technology for Economic and Clinical Health (HITECH) Act in 2009.

“The iPhone was barely on the market and we weren’t thinking about technology in the way we use it today,” she said. “As an example of how technology enables the practice of medicine, ask a clinician or a nurse about the ability to do drug-drug interactions” versus looking it up. “We now have tools to support and enable that,” she said, also noting that there is ongoing evidence that clinical decision support (CDS) tools improve the safety of care. And along with electronic health records (EHRs), there has been an explosion of other technology that has come on board in the healthcare space.

“The IoT (Internet of Things), the information that patients want to put into their systems, all the other devices in the hospital and there is an array of EHRs that are increasingly using shared standards, but we’re not quite there, and they are interacting with other technologies, including technologies regulated by the FDA and others not regulated. We were trying to get to a place where the standards were common on a floor and encourage sharing of information and build the business case so people have a reason for data to flow,” she said.

DeSalvo added, “The reality is, health IT is in an adolescent phase; it’s still clunky. There are clinicians sitting in a clinical room trying to find information and there is still a lot of hunting and pecking going on. We still have a great deal to do to streamline that and reduce some of the noise in the systems, so the signal comes out more clearly, and that’s part of the usability.”

Karen DeSalvo, M.D.

She also acknowledged the documentation burden that many clinicians face when using EHRs, and the need to ensure accurate patient identification. “There is interesting work going on in that space. The data is accumulating, EHRs are making care safer and making the practice of medicine better, but it needs to be smoothed and easier to use the systems. And, we need to make sure we’re linking the right care plans and medications with the right patient, not just in that care setting, but also globally,” she said.

In its patient safety and health IT report, BPC recommended the development of a coordinated public-private leadership effort to set health IT safety priorities. DeSalvo said she agrees that more colllaboration is needed.

“The private sector has to step up and create a safe environment where they can share information about what’s working, what’s not working and how to solve safety issues that arise,” DeSalvo said. “Safety and security kept me up at night. There are people who will report problems but not everybody is going to be a good actor.” She added that there needs to be peer pressure to get everybody to do the right thing. “And, it’s not just the big developers and big health systems that are engaged, you want to make sure you don’t leave anybody behind, such as the rural hospitals and the federally qualified health centers.”

The discussion turned to the challenges of achieving interoperability, and von Eschenbach noted that interoperability issues are as much a cultural challenge as a technical one. “Physicians, and I’ll take the blame as a surgeon, we grew up in a culture that was highly individualistic, today the game is about being a team that has to work together. Whatever part we’re playing, we have to learn to come together and work together in a collaborative, interoperative way.”

Frist asserted that the movement toward value-based payment and value-based care could be a driver for a more team-based culture. “I don’t think you can get there without a team-based culture,” von Eschenbach said, adding, “The reason why it’s so critically important is the data management systems are giving us the toolkit, and we struggle with variability—variation in the diseases, variation in the person with the disease, variation in the treatment—and to manage that variation you need data and information systems to do it. When you do that effectively, you reduce variance, which improves quality for any group of patients.”

The movement to value-based payment is a big driver to get health systems to think about coordination of care, DeSalvo said, as “the more risk you take, the more you need to see on your dashboard where patients are getting care outside of your system” and access to better data often drives a change in behavior, she added.

Interoperability and the Role of Consumerism

DeSalvo surmised that there are two approaches to interoperability, the early way, she said, was getting two systems to talk to each other, yet she sees consumerism playing a large role in the evolution of data exchange.

“The policy that we had, in my time, was to make the data free so it’s interoperable. When we begin to require APIs on the technology systems, that’s an open opportunity for innovation, as it’s also free to be hosted on behalf of a person, a consumer. This model of consumer-mediated exchange creates a completely different window to their health world, and consumers can make sure the data is accurate, and that people on the care team can see it. Interoperability doesn’t have to be two technology systems talking; there’s actually a new world emerging. Patients are hosting the data, as well as scientists, and leveraged by technology and the push and pull in the industry, people are now willing to free that data to put it to good use.”

Further, DeSalvo said, “As ONC Coordinator, I said it, and I’m still saying it, there’s data blocking. You hear it from payers, providers, scientists, and pharma, and at end of the day, this movement toward consumer-mediated exchange, it has some legs and it gives consumers more control in that space.”

Consumers are an integral part of the care team, DeSalvo said, and “giving consumers more power, agency and more interest in the game” will spur more data exchange. “The more their out-of-pocket costs are, the more interested they are in choosing their provider, their service, their access, and they want more and more want access to information, and if they want to use telehealth or choose a new provider, they have that control.”

Von Eschenbach said physicians are often concerned that interoperability standards hinder innovation, yet he asserts that interoperability enables healthcare providers and researchers to innovate through collaboration. “There is this notion about the application of standards, that it can cause us to lose our individuality, creativity and innovation. There is a tension as doctors are practicing and they will say, ‘Don’t tell me how to communicate and regulate me.’ What we’re talking about is creating a standard for the track upon which different railroad cars can run. Everybody can have their own railroad car as long as it’s built in a way that it runs on the same track, that’s the concept of what we’re trying to do here. The innovation occurs within a framework that allows you to share information and be interoperable and be on the same track. It’s not taking anything away, you still have your own innovative approach to whatever systems you are putting in place.”

During a Q&A following the panel discussion, one audience member voiced frustration that interoperability is not a requirement for EHR manufacturers and Frist asked the panelists if government efforts have prioritized interoperability high enough.

“No, we haven’t. As a practicing physician, we need to make systems more user friendly, as in many cases, it feels like they are getting in the way and giving us more work to do,” von Eschenbach said.

DeSalvo said interoperability was her No. 1 priority as ONC Coordinator. “When HITECH passed, the focus of that was to offset the cost of adoption and get them to be used for clinical care and population health and there was very successful work that came out of that. With the infusion of cash into the industry, what resulted was a lot of existing EHRs with proprietary standards blossomed and grew. The focus at the time wasn’t on the shared standards. Since 2014, when I was ONC Coordinator, the budget is about $60 million, and it was a big ship to turn with limited resources, and to pull together the private sector, the federal partners, and build a business case for interoperability.

She added, "It’s going to take a little bit of time, and it’s an important thing to remember that there are minimal resources, and they’ve taken another hit," referring the budget cuts for ONC in the Trump Administration's proposed budget, "I don’t think the work is done.”

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