Massive funding increase fuels expansion of PCORI 'network of networks'

The Patient-Centered Outcomes Research Institute (PCORI) has announced new funding of nearly $142.5 million to expand its national "network of networks" known as PCORnet to advance patient-centered clinical research.

The awards will support 34 partner networks, seven of them new to the initiative. In addition, it will back a three-year second phase of development, during which several research studies will begin.

The new networks focus on Alzheimer's disease and dementia, autism spectrum disorders, heart disease, obesity, Parkinson's disease, behavioral health disparities among low-income populations and health disparities among sexual and gender minorities, among other areas.

The program now supports 13 clinical data research networks (CDRNs), including the Louisiana Clinical Data Research Network and Mayo Clinic's Patient-Centered Network of Learning Health Systems, and 21 patient-powered research networks (PPRNs), such as the Collaborative Patient-Centered Rare Epilepsy Network and the Interactive Autism Network.

Participating networks during the next three years are expected to demonstrate their ability to support large randomized and observational multi-network studies, as well as rapid-cycle studies and other types of research using standardized data sets with strong patient privacy and security protections, according to the announcement. 

"Our main goal for the next three years is to sharply ramp up PCORnet's capacity to serve as the platform for rapidly and efficiently conducting high-quality, patient-centered studies," Rachael Fleurence, director of PCORI's Comparative Effectiveness Research Methods and Infrastructure Program, said in the announcement.

In March, PCORI announced $5 million in funding to demonstrate PCORnet's ability to engage health system leaders and clinicians in its mission.

A Government Accountability Office report issued in March found PCORI operating in accordance with requirements of the Affordable Care Act, but said the lack of a standard data model poses a hindrance to plans for PCORnet.

To learn more:
- read the announcement