HHS to develop data-sharing plan for outcomes research

Two HHS agencies announced they are partnering with one another to develop an interoperable data infrastructure to support patient-centered outcomes research. Such research compares the effectiveness of various treatments and procedures, within the framework of what works best for patients.

The Office of the National Coordinator for Health Information Technology and the Office of the Assistant Secretary for Planning and Evaluation will lead the initiative, aided by the National Opinion Research Center, a not-for-profit, academic research organization at the University of Chicago, HHS said Wednesday. HHS cited a total of nearly $200 million made available through the Patient Protection and Affordable Care Act for building such an infrastructure.

The announcement comes just a month after the Washington-based Patient-Centered Outcomes Research Institute said it would invest up to $68 million to create a clinical research network.

Established by the healthcare reform law, PCORI functions as an independent, not-for-profit that promotes, funds and disseminates comparative effectiveness research.

In an April 23 news release, PCORI said it would use the funds to “support up to eight new or existing (clinical data research networks).”

The efforts of the two HHS agencies are meant to be complementary to the work PCORI is undertaking, an ONC spokesman said in an e-mail. He said the groups plan to work closely together to craft data-sharing policies, standards and services.

“We want to work alongside PCORI to ensure that we help lay the foundations for their discoveries to be nationally scalable as quickly and effectively as possible,” the ONC spokesman said.

Dr. Farzad Mostashari, national coordinator for health IT, was also on an April 23 PCORI roundtable panel about building a national data infrastructure to advance comparative effectiveness research.

PCORI recently announced its second wave of 51 comparative effectiveness research grants, totaling more than $88 million. The first round, announced in December, totaled $33 million for 25 projects.

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