Patients, caregivers, and others with an interest in improving clinical research can provide a unique voice to inform researchers and help identify knowledge gaps by sharing their experiences with the daily burden of disease conditions, their thoughts on opportunities for treatment, and the types of research questions they value the most.
The Role of Patients and Stakeholders as Research Partners
Patients and stakeholders play leading roles in all PCORnet Partner Networks. For each PPRN, a patient, advocate, caregiver, or community member serves as a principal investigator or co-principal investigator. In each CDRN, patients and stakeholders lead efforts as representatives in local governance, representing patient and stakeholder interests at the CDRN network and PCORnet levels, and drive the development and implementation of research studies.
- Patient and stakeholder engagement, both within the Partner Networks and at the broader PCORnet level, is embodied within the PCORnet Governance Policy.
- Patients are represented on each of the PCORnet Committees.
- Each Partner Network must have an Engagement Policy and associated Standard Operating Procedures that meet the outlined requirements, including describing patient engagement in the research process and network decision-making.
- Discover specific PPRNs that you may want to connect with by browsing through the PPRN Conditions List, which catalogs conditions currently represented by PCORnet PPRNs.
- We encourage patients to visit our Partner Network pages, where we list contact information, areas of focus (including populations and conditions), and other details to connect with networks of interest.