The Patient Centered Outcomes Research Institute is paving a large part of its foundation with a new round of $191 million in grants for comparative effectiveness and clinical data research networks.

Bringing PCORI’s total research support to $464 million for 279 projects so far, the new round of grants include $97.3 million for comparative effectiveness research into heart disease, cancer, obesity, chronic pain, diabetes, respiratory disorders and mental health, and $93.5 million for data networks that will come to form PCORnet, a national network for clinical and health outcomes data and research.

The awards were approved during a PCORI board of governors meeting, and include funding for projects exploring patient and family decision-making and health solutions for specific patient populations.

Eight of the awards are for probing ways to reduce uncontrolled asthma in African American, Hispanic and Latino communities that are at the most risk of developing the respiratory disease, one of PCORI’s high priority areas.

Among the other 45 comparative effectiveness studies are a comparison of smoking cessation versus long-term nicotine replacement (potentially lending evidence to the contentious public health debate over electronic cigarettes); a comparison of patient-assisted neuropathy interventions (potentially offering models for managing a type of pain millions of diabetics suffer); a study of community-based care following emergency department visits for chronic condition patients; a study of initiatives health plans are taking to reduce prolonged opioid therapy; and a study on improving randomized clinical trial designs to generate clearer evidence of benefits and harms in subpopulations (an important part of advancing personalized medicine).

PCORI's current portfolio

The Institute’s executive director, Joe Selby, MD, the former research director for Kaiser Permanente in Northern California, said the growing research portfolio “will contribute much-needed insights about the benefits and risks of a range of medical interventions and approaches to healthcare delivery.”

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The $93.5 million for data networks is set to help build and expand 11 clinical data research networks and 18 patient-focused research networks, collectively forming PCORnet.

Those 11 clinical data networks are geared toward researchers and providers, based on partnerships among health systems and other providers collecting and sharing data from varying sources, including EHRs, with many of the awards supporting regional data sharing hubs or national warehouses for topics like pediatrics and community health.

Patient-power researched networks, meanwhile, are intended to serve patients, their partners and caregivers to foster information exchange on particular conditions through online communities. Among those are a network for Phelan-McDermid Syndrome, a rare genetic disorder linked to developmental delays; NephCure Kidney Network, for patients with kidney disorders; and a network for arthritis patients.

“PCORnet will serve as an important foundation for transforming the nation’s healthcare system into one that is able to constantly learn what works best by facilitating more efficient comparative effectiveness research,” said Rachael Fleurence, PCORI’s methods and infrastructure program director. “It also will promote broader participation of patients, clinicians, health systems, and payers in the research process and help connect patients interested in participating in studies with researchers conducting trials.”