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HHS Looks To Close Healthcare Data Infrastructure Gaps

Federal health agency studies the data standards, security, methods and other factors needed to support patient-centered outcomes research.
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Two units of the Department of Health and Human Services (HHS) have embarked on an effort to identify how the government can help fill gaps in the data infrastructure required to do patient-centered outcomes research (PCOR). The Office of the National Coordinator of Health IT (ONC) and the Office of the Assistant Secretary for Planning and Evaluation (ASPE) are collaborating in the initiative, which they expect will take 10 months.

The ONC has awarded a contract to the National Opinion Research Center (NORC) at the University of Chicago to assist with the effort. NORC, which has had extensive experience in working with government agencies, will assemble "multiple advisory groups to explore different standards, policies and services required to establish this infrastructure," the listserv announcement said. "In addition, ONC will be posting documents from this effort for public input," it said.

The Affordable Care Act directs HHS to build data capacity for patient-centered outcomes research -- also known as comparative effectiveness research (CER) -- which evaluates which tests and treatments are most effective. The law also establishes the Patient-Centered Outcomes Research Institute (PCORI), a nonprofit entity that is managing the national CER program.

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Of the funds allocated for this purpose, 80% are going to PCORI and 20% to the HHS PCOR Trust Fund, according to an ONC official who asked not to be identified. Four percent of the total funding, or nearly $200 million, will be available through ASPE to assist in the development of the PCOR data infrastructure through FY 2019.

In essence, the ONC official told InformationWeek Healthcare, ONC is going to look at the long-term strategic direction of the CER effort, what will be required to create the necessary infrastructure, where the gaps are, and which areas should receive priority for government funding.

Among the areas currently under consideration are:
-- data standards,
-- data aggregation and access,
-- data sources and content that need to be captured,
-- data security policies,
-- governance policies and structures,
-- analytical methods, and
-- how to translate research results into improvements in patient care.

In its planning, ONC will consider all of the current activities that could help support CER, including the activities of PCORI and those of ONC and the Centers for Medicare and Medicaid Services (CMS) in encouraging health information exchange and interoperability.

"We want to leverage everything we have in place now and a lot of the activities that are going on already, and how can we make complementary strategic investments that will move that ball forward quickly," said ONC's spokesperson.

The CMS recently solicited suggestions about new patient outcomes measures that could be added to the metrics in the Physicians Quality Reporting System (PQRS), widely regarded as the forerunner of the agency's pay-for-performance program for physicians. Although that program focuses on provider evaluation, and the CER program is about assessing the effectiveness of treatments, the ONC official noted that there could be synergies among government programs that depend on reporting of data from electronic health records.

"Our focus will be on comparative effectiveness research," she said. "But the last thing we want to do is create silos in this infrastructure."

PCORI, meanwhile, has not waited for the data infrastructure to be perfected to start its work. The institute recently announced it would spend up to $68 million to support development of a National Patient-Centered Clinical Research Network. PCORI has allocated $56 million to support up to eight new or existing clinical data research networks that will conduct randomized CER studies using data from clinical practices. In addition, it will provide $12 million to support up to 18 new or existing "patient-powered research networks." Over time, PCORI expects all of these networks to become integrated with each other, the announcement said.

In May, PCORI approved 51 research awards totaling $88.6 million over five years. That brought the total of PCORI's grants for specific studies to $129.3 million. A third round of grants is expected later this year.