Reform Update: PCORI to fund $93.5 million for clinical research network

The nation's ability to conduct efficient comparative-effectiveness research—the study of what does and doesn't work in clinical practice—is getting a $93.5 million jolt from the Patient-Centered Outcomes Research Institute to erect a clinical research network.

Dr. Francis Collins, director of the National Institutes of Health and a PCORI board member, called the organization's efforts “a major step forward” for the discipline. The independent not-for-profit institute was established and gets its funding under the Patient Protection and Affordable Care Act.

“This initiative will provide an unprecedented opportunity to streamline clinical trials, empower patients and build a solid foundation for personalized medicine,” Collins wrote in a blog post. “NIH is thrilled that these organizations have come together and agreed to create a single, overarching network that will be seamlessly integrated using electronic databases. But the real excitement will come once we see this network in action: helping to speed efforts by clinical researchers to test the treatments and cures that so many people urgently need.”

The funding is 37% more than PCORI said in April it would spend on the effort this year. PCORI spokeswoman Christine Stencel said the increase was in response to the volume and quality of award applications the organization received. “There's quite a bit of excitement about the network's potential to increase comparative effective research efficiency,” she said.

During a Dec. 17 meeting (PDF), the PCORI board approved spending $191 million to fund 82 comparative research projects, which included grants to build the patient-centered clinical research network.

The $93.5 million will be split among 18 research networks focused on patients with a particular conditions who are interested in sharing health information and 11 clinical data research networks with healthcare systems collecting data during the routine course of delivering care.

One of those 11 networks is the Chicago Area Patient-Centered Clinical Outcomes Research Network, or CAPriCORN, an initiative that includes nine regional healthcare provider institutions (including local Veterans Affairs Department hospitals) and 11 other organizations coordinated by the Chicago Community Trust charity foundation with administrative support from the Illinois Medical District Commission.

CAPriCORN received an 18-month, $7 million award to go toward building a data infrastructure intended for use in improving outcomes and lowering costs in the treatment of anemia, asthma, diabetes, obesity, recurrent clostridrium difficile and sickle cell disease.

“We need to make better use of the data that is collected every single day,” said Dr. Jerry Krishnan, University of Illinois associate vice president for population health services and a principle investigator for the project. “It isn't just about generating research for a medical journal to be put on a shelf.”

Krishnan said the participating institutions will collect clinical and administrative data and create a clinical data registry. Advisory groups will identify knowledge gaps and help direct research, interpret and disseminate findings, and implement strategies to put them into practice.

Patient clinical and claims data will be linked, so the network will take steps to protect privacy by “borrowing and learning” from integrated systems such as the VA and managed-care organizations.

Because of set budgets and timelines, CAPriCORN was formed by organizations that had experience working together on similar efforts, but the participants hope that others will join.

PCORI has awarded almost $465 million for 279 comparative effectiveness research projects since last year. Its link to the still-controversial healthcare reform law has been the source of some criticism, and comparative effectiveness research is also seen by some as a tool to coerce doctors to conform to practices dictated by research findings.

“Comparative effectiveness, at its core,” Krishnan countered, “is about generating information that's useful for patients and clinicians to make decisions about treatment options.”

A survey of hospital executives by Premier suggests more than 50% of U.S. hospitals will have launched or joined an ACO by the end of 2014. Then again, last year's version of the survey indicated hospitals would pass that threshold by the end of this year. That number, though, remains under 25%, according to Premier's 2013 Economic Outlook. The company, publicly traded since September, provides group purchasing and performance improvement services—including data analytics and other services supporting ACOs. More than three-quarters of the 2013 survey's respondents—115 C-level executives in 35 states—said they have plans to eventually join the estimated 500 existing ACOs, according to Premier.

Follow Andis Robeznieks on Twitter: @MHARobeznieks