The inaugural class of Patient Engagement Partners (PEP) has graduated, marking a significant stride toward bolstering the inclusion of patient-centered insights in research powered by PCORnet®. The PEP program, which included six patient partners in its first year, was established to diversify patient representation on PCORnet governance and fortify the bridge between researchers using PCORnet resources and the lived experiences of people who will benefit from their research. This kind of active engagement in research is important to ensure research pursuits are well aligned with the needs of patients.
This inaugural PEP program comprised people with many diverse experiences, including those related to autism, HIV, Alzheimer’s disease, cardiovascular disease, mental illness, and more. Now that they have completed the program, these graduates are ready to bring their experiences and perspectives to a range of research activities, such as consultation with research teams on study design, support for engagement and dissemination plans (which may be one-off PCORnet® Front Door support or ongoing advisory roles), and service in a PCORnet governance or leadership role. Opportunities will be offered to PEP graduates as needed, and interested research teams can reach out to the PCORnet Project Management Office (PMO) to engage PEP graduates in their work.
“With this graduating class, we have built a go-to panel of people that research teams leveraging PCORnet can quickly connect with to generate patient-centered insights relevant to their work,” said Cherie Binns, a patient partner and leader of the PEP program. “We are so grateful to this first cohort of PEP graduates, who worked with us to stand up this program and begin establishing it as a truly valuable resource.”
“The PEP program has been a great experience,” said Michelle Fundora, a graduating PEP participant who contributed her experience as a patient advocate and family caregiver of a child with attention-deficit/hyperactivity disorder (ADHD). “I learned a lot about how research powered by PCORnet supports patient-centered outcomes, and I’m looking forward to carrying these learnings to future engagement opportunities.”
Thank you and congratulations to the inaugural class of PEP graduates! Are you using PCORnet resources to power your research and interested in insights from these graduates? Contact the PCORnet PMO to learn more about opportunities to engage their support.