The Patient-Centered Outcomes Research Institute (PCORI) board of governors has approved spending nearly $142.5 million to support the ongoing development and expansion of PCORnet, the national patient-centered clinical research network.
The funds include support to add seven new health data networks to the collaborative initiative, which is designed to link researchers, patient communities, clinicians, and health systems in research partnerships that leverage the power of large volumes of health data maintained by the partner networks.
The funding awards approved July 21 will support a three-year second phase of development during which several research studies will begin. Specifically, the funding will support 34 individual health data networks that together make up PCORnet, including continued support for 27 networks selected to participate in PCORnet's first phase of development, which began in April 2014.
The seven new networks bring expertise, resources, and patient participation focused 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.
Together, the 34 PCORnet partner networks cover more than 150 conditions and a wide variety of population groups. Many of the networks involve multiple organizations, giving PCORnet sites in every state nationwide. A list of all partner networks can be found at pcori.org/pcornet.
"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," said Rachael Fleurence, Ph.D., director of PCORI's Comparative Effectiveness Research Methods and Infrastructure Program, in a prepared statement. "We'll continue to facilitate a national conversation about what it means to share health data and the roles we all have in addressing the health questions and outcomes that matter most to patients."
PCORnet integrates health data for studies and catalyzes research partnerships among two types of networks: Clinical Data Research Networks (CDRNs), which are based in healthcare systems such as hospitals and health centers, and Patient-Powered Research Networks (PPRNs), which are run by groups of patients and their partners who are focused on one or more specific conditions or populations and are interested in sharing health information and participating in research. With the addition of the new networks, PCORnet's collaborative "network of networks" now consists of 13 CDRNs and 21 PPRNs.
During the next three years, the participating networks are expected to demonstrate their capacity to support large multi-network studies, both randomized and observational, as well as rapid-cycle studies and other types of research using standardized data sets with strong patient privacy and security protections. In addition, the partner networks are expected to significantly increase their collaborations and to develop plans for sustaining their operations beyond the end of this phase.
