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 play prominent leadership roles in PCORnet partner networks, such as serving as principal investigators and representatives of patient interests at both the partner network and broader PCORnet levels.
- 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.
- Review recordings and outputs from past Building Trustworthiness in PCORnet public meetings and learn how PCORnet brings together patients, caregivers, clinicians, industry, researchers, policy makers, and advocacy groups to work on fostering trust in clinical research.