HIT Policy Committee: PCORI exec says MU paved way for research

“What we are doing wouldn’t have been thought of if Meaningful Use (MU) hadn’t made the progress that it had,” Patient-Centered Outcomes Research Institute (PCORI) Executive Director Joe Selby, MD, MPH, said in a report to the Office of the National Coordinator for Health IT’s (ONC’s) Health IT Policy Committee on June 5.

Selby, who spoke at the meeting to educate the committee on PCORI’s work, said two projects in the pipeline in part stem from the success of ONC’s MU program. At the end of this year, PCORI will award $68 million in funding for clinical data research networks and patient-powered research networks.

“I think this vision is a natural outflow of Meaningful Use, which empowers patients to participate in their own care,” Selby said, adding that the new networks will “empower patients, clinicians and physicians to conduct the research they need to improve the care they deliver and receive."

These networks support PCORI’s larger goal of developing infrastructure for rapid, efficient and high volume patient-centered comparative research, he said. “It would be the network of networks, an overarching network.” Specifically, he described a central coordinating center that will bring together data from both the systems-based and patient-centered networks.

Characteristics of this network, according to Selby, include clinical data from EHR and other data sources stored in standardized, interoperable formats; capacity to conduct both observational studies and randomized trials embedded in clinical settings, rigorous practices for data security and confidentiality; appropriate oversight; and safety studies.

Selby further elaborated that the ideal data network will cover large, diverse, defined populations, capture longitudinal data, activate patient and clinician engagement in the use of data, collect patient-reported outcomes and act efficiently in terms of costs for data acquisition, storage and analysis.

Selby stressed that funded entities must commit to establishing interoperability “from day one.”  

ONC’s future role as a member of the steering committee of the national patient-centered clinical research network will further synergize their work, he said.

Selby also pointed out that the establishment of such a network is fraught with challenges. In addition to interoperability, he cited EHR adoption and human subject protection as challenges. Also, he said a challenge is for healthcare providers to admit to patients that they do not always know the absolute best treatment for a condition. Such a narrative is required when inviting them to participate in randomized studies, he said.