PCORI to democratize research

April 27, 2013 in Medical Technology

Evoking the “network of networks” notion, Patient-Centered Outcomes Research Institute, PCORI, has unwrapped a pair of funding initiatives designed to ratchet up large-scale comparative effectiveness research with patients at the center.

“We went into this thinking clinical networks were the answer,” Joe Selby, MD, executive director of PCORI, said in announcing the initiative on April 23, adding that along the way another option — patient-powered networks — emerged. “We came out thinking a hybrid approach is the right way in this country at this time.”

[See also: PCORI funds $12M in research.]

That hybrid model will include patients, health systems, payers, physicians and researchers as active participants. To that end, PCORI detailed two cooperative funding agreement opportunities to support the creation of Clinical Data Research Networks, CRDN, and Patient-Powered Research Networks, PPRNs. 

Particular to the CRDNs, PCORI will award $56 million to as many as eight existing or new networks, while the PPRNs funding total is $12 million, available to 18 networks.

“I love the vision of radically democratizing research,” Farzad Mostashari, MD, the national coordinator for health IT said during a panel discussion immediately following the announcement. “We are taking the patient experience happening and making that contribute to the world’s knowledge.”

Calling it a “vision of optimism,” Nancy Davenport-Ennis, founder and CEO of the National Patient Advocate Foundation, explained during the panel that it would also be a boon to patients — most of whom don’t routinely think about electronic health records, interoperability, or authentication, but do seek information to understand the benefits and risks of treatments and services.

[See also: PCORI launches contest to aid comparative effectiveness research.]

“The promise is to give them new tools to become informed,” Davenport-Ennis said, adding that it’s imperative to focus on what patients want and can actually use, notably information that’s easy to understand, resides in one location, and is credible. “They want to make actionable health information easily translatable to their entire circle of care.”

Indeed, involving the various stakeholders in the hybrid approach PCORI also promises widespread benefits to the industry.

“Using the clinical networks we’ll be able to get a better understanding of what works and what doesn’t work in healthcare,” said Janet Marchibroda, director of the Bipartisan Policy Center’s health innovation initiative, who moderated Tuesday’s PCORI panel.

PCORI described these funding announcements as the first phase and explained that future stages will be based on the results.

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