PCORnet is made up of 33 partner networks—13 Clinical Data Research Networks (CDRNs), based in healthcare systems such as hospitals, integrated delivery systems, and federally qualified health centers, and 20 Patient-Powered Research Networks (PPRNs), operated and governed by groups of patients and their partners focused on one or more specific conditions or communities, and interested in sharing health information and participating in research.
Initially, these networks will be focused on more than 150 specific conditions and communities of interest. Over time, the intent is for PCORnet to serve as a platform for rigorous research on an even broader array of topics. The scientific expertise, large population size, and diversity of PCORnet make it a unique resource for both observational and interventional studies in these and other areas.
The Need for Patients in Research
Patient groups can provide a cohesive patient voice to inform researchers of the types of questions and points of interest and value to patients, the daily burden of disease conditions, and opportunities for treatment.
The Role of Patients as Research Partners
Patients play prominent leadership roles in all networks. In each PPRN, a patient serves as principal investigator or co-principal investigator. In each CDRN, patients serve as representatives in local governance, representing patient interests at the Network and PCORnet level. One representative of each Network serves as a voting member of the PCORnet Council.
Each networks must have an Engagement Policy and associated Standard Operating Procedures that meet the following requirements and that describe how the requirements are achieved:
- Patients are partners in the research process.
- Patients are involved in network leadership positions.
- Patients are involved in decision making about network participation in proposed studies.
- Patients are involved in formulating research questions; defining essential characteristics of study participants, comparators, and outcomes; identifying and selecting outcomes that the population of interest notices and cares about (e.g., survival, function, symptoms, and health-related quality of life) and that inform decision making relevant to the research topic; monitoring study conduct and progress; and designing and suggesting plans for dissemination and implementation activities.
- Patients who contribute to PCORnet at large and to Network leadership roles are compensated.