After White House interoperability meeting, AMIA’s CEO sees research carve-out in upcoming regulations

White House
A White House interoperability meeting on Tuesday featured input from payers, providers, tech companies and regulators. (Pixabay)

A White House-hosted meeting of the minds on interoperability on Tuesday afternoon featured a broad range of industry stakeholders including health IT associations, big tech companies, payers, providers and regulators.

The event included comments from Centers for Medicare & Medicaid Services (CMS) Administrator Seema Verma, White House Advisor Jared Kushner and Office of the National Coordinator for Health IT lead Donald Rucker, M.D. Each focused on the federal government’s concerted effort to put healthcare data in the hands of consumers.

But American Medical Informatics Association President and CEO Douglas Fridsma, M.D, Ph.D., said in addition to the emphasis on patient access, there appears to be more room for researchers as well. Fridsma referenced Rucker’s focus on a “learning health system” and “bulk access to population health level data” alongside Verma’s emphasis on making Medicare and Medicaid data readily available to researchers. Reading between the lines, it appears the administration could be focusing on ways to open up data sets to new powerful technologies.  

Conference

2019 Drug Pricing and Reimbursement Stakeholder Summit

Given federal and state pricing requirements arising, press releases from industry leading pharma companies, and the new Drug Transparency Act, it is important to stay ahead of news headlines and anticipated requirements in order to hit company profit targets, maintain value to patients and promote strong, multi-beneficial relationships with manufacturers, providers, payers, and all other stakeholders within the pricing landscape. This conference will provide a platform to encourage a dialogue among such stakeholders in the pricing and reimbursement space so that they can receive a current state of the union regarding regulatory changes while providing actionable insights in anticipation of the future.

“It suggests to me that they are thinking about not only individual data access but the ability to do broader analytics,” he said. “That’s tremendously important when it comes to the research community to understand what works and what doesn’t.”

The meeting was far more widely publicized than last year’s series of interoperability meetings that featured many of the same participants discussing a number of the same barriers. Last year’s meetings set the stage for the administration’s MyHealthEData initiative launched in March, which has been routinely touted by administration officials as an opportunity to improve access for patients.

RELATED: Information blocking provisions will be 'largely common sense,' says ONC’s Rucker

In addition to keynote speeches by top Trump administration officials, participants engaged in smaller breakout sessions on specific interoperability pain points. Fridsma said his group—which included representatives from Google, IBM, insurers and EHR vendors—focused on privacy and security.

It’s clear that legislators will need to establish a more consistent but flexible framework for patient data. Currently, HIPAA, the Federal Communications Commission and the Common Rule govern bits and pieces of privacy, but gaps remain.

“If patients get their data out of an EHR and put it into the app and allow a researcher to use that, they may think the same protections apply, but they don’t,” Fridsma said, adding that legislation that ties multiple laws together would be better than regulation in the form of a new rule.

RELATED: Verma says interoperability rule is coming, backs data sharing as a Medicare requirement

A request for information currently under review by the Office of Management and Budget (OMB) includes possible changes to HIPAA to “support, and remove barriers to, coordinated care.”

Everyone’s ears were perked for any hints about the forthcoming information blocking and interoperability rules that are still under review by the OMB. But the administration remained mum on when that rule might release. Verma said last week the interoperability rule should be coming “shortly.”

Fridsma, who worked as a chief scientist at ONC under the Obama administration, said he left feeling optimistic about the future, particularly since the meeting was a signal that interoperability remains a bipartisan issue. But he also cautioned that the administration's next steps are tenuous.

“We have to take a path of least regression,” he said. “We have to make incremental progress that doesn’t box us into a solution.”

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