DeSalvo: Healthcare data remains ‘very highly blocked’
It’s been a full year since Karen DeSalvo, MD, resigned as head of the Office of the National Coordinator for Health Information Technology. But she continues to be a tireless champion for healthcare IT and interoperability.
Data remains “very highly blocked,” says DeSalvo, who has returned home to New Orleans, where she previously served as Commissioner of Health before taking the job at ONC in 2014. “I’m still evangelizing about that because I hear it everywhere I go, whether I’m talking to public health officials, payers, healthcare systems or researchers.”
DeSalvo left ONC in August 2016 to focus on her other duties as then-Acting Assistant Secretary of Health; she officially left government service in early 2017 at the end of the Obama administration. Since departing from the Department of Health and Human Services about six months ago, she has been doing some consulting work, speaking and writing about the challenges of healthcare in the current environment.
“As we move into this really intense era of cost containment in the country, the more access we have to the clinical information about outcomes is going to be so necessary because we’ll have to understand if the interventions are actually improving health—not just reducing utilization,” adds DeSalvo.
Despite the widespread adoption of electronic health records, the integration of healthcare data remains a critical challenge for the industry, according to DeSalvo, who contends that unlocking data through tools like open application programming interfaces (APIs) remains an important piece of the interoperability puzzle.
While DeSalvo is no longer leading ONC, she is keeping tabs on the agency’s current leadership under National Coordinator for Health IT Donald Rucker, MD, who was appointed by President Trump in March.
“I’ve been pleased to see that Don Rucker and the team have continued on the pathway of work we were doing around freeing data by requiring APIs and really putting the patient front and center,” notes DeSalvo.
Rucker has touted the value of open APIs in helping to solve the problem of HIT interoperability. “You look at Silicon Valley, you look at modern computing,” he told reporters last month, “it’s all about APIs.”
APIs are part of ONC’s 2015 Edition of Health IT Certification Criteria final rule, which came out during DeSalvo’s tenure, requiring certified EHRs to demonstrate the ability to provide a patient-facing app with access to the Common Clinical Data Set via an API. APIs were also included in the final Meaningful Use Stage 3 rule, requiring certified EHR technology to provide an API through which patient information can be viewed, downloaded and transmitted to a third party. In addition, the 21st Century Cures Act includes a number of interoperability provisions, such as calling on HIT developers to publish APIs to assist with the access and exchange of information.
“A push was to get everybody off the idea that all the answers are in the electronic health record, but that’s instead just a source of data, and we need to free that so it can be aggregated in other places,” comments DeSalvo. “We did so much work with the private sector and across government to build consensus. There’s so much momentum in the private sector around getting that work accomplished from a technical and a cultural standpoint. The standards have progressed really well.”
Nonetheless, DeSalvo says she is watching ONC “to see if there’s still this priority around data liquidity, APIs and the mode of interoperability, coupled with things like network-of-networks interoperability and existing HIE infrastructures—as opposed to relying on Direct more heavily.”
DeSalvo points out that as the head of ONC she “pulled back” on Direct as a transport protocol for sending clinical data between providers and from patient access portals to other providers, caregivers and EHRs, because she believed it was not the right choice to fundamentally enable long-term interoperability, compared with other robust transport standards.
“I think it’s about a use case, but I would like to see this country still taking an opportunity to use all of the modalities because I don’t think any one of them is the single solution,” DeSalvo adds.
Another development she is watching closely in Washington are recent efforts by the Republican Congress to repeal the Affordable Care Act, which she has concerns about because of the potentially negative impact that such legislation would have on data sharing at the patient level should health insurers be able refuse to cover patients or charge them more because they have a pre-existing condition.
“When somebody has a comfort that pre-existing conditions are not going to be used in their rating, in their premium amount or prevent them from getting health insurance, people are going to be more forthcoming not only about giving information to the healthcare system but also about sharing that data,” DeSalvo contends.
If Obamacare is repealed, there would be far less willingness to be transparent about personal health data, she says. “If a repeal were to take away that kind of consumer protection, I think we could see some real faltering of the consumer desire to share data, much less in the systems,” DeSalvo claims.
The former ONC chief is also wary about the effect that GOP healthcare reform proposals could have on health IT, particularly deep Medicaid cuts that could put some hospitals at dire financial risk negatively impacting their HIT budgets, operations, staffing, and ultimately innovation.
“As budgets get skinnier, you take away the things that are less obvious to see and you take for granted—people might be less likely to upgrade systems,” DeSalvo observes. “Smaller budgets—coupled with delays in expectations of using the 2015 Certification Edition—give hospitals and health systems more latitude to not make investments in their health IT infrastructure.
“What I’m hearing from providers all across the country—frankly, everyone in the healthcare sector—is about the instability. People just are not sure what the future’s going to bring—it’s creating a lot of uncertainty in the marketplace,” she concludes. “It’s been interesting to watch from the outside—I’ll tell you that.”