June 21, 2022

The science of patient engagement: How PCORnet® is leading the next hot topic in clinical research

PCORnet®, the National Patient-Centered Clinical Research Network, was designed with the premise that having patients as equal partners in all aspects of the network would revolutionize the way we seek research answers. Now, a new manuscript published in Learning Health Systems shares how the PCORnet infrastructure can serve as a model for the burgeoning science of patient engagement, providing much-needed insights on how large research networks can effectively engage patients.

“If we can learn how to effectively partner with patients across the research continuum—from defining research questions through study design, conduct, and dissemination—we can generate findings that are more relevant, complete, and trusted by communities,” said Elizabeth Cope, senior director of public and population health at AcademyHealth and lead author of the manuscript. “As one of the few large-scale networks that has incorporated patient partners across its governance, infrastructure, and research projects, PCORnet offered us a unique opportunity to learn about the diverse array of engagement practices across affiliate networks.”

Key Takeaways

The manuscript’s authors worked with PCORnet® Clinical Research Networks, or CRNs, to conduct an engagement practice scan between June 2020 and February 2021. They looked at documents, worksheets, and interview transcripts, ultimately identifying 87 engagement structures, assets, and services across the CRNs. Some takeaways from the scan include:

Infrastructure matters. By investing in a standing engagement infrastructure with established patient relationships, the research community can also help address two of its most highly cited barriers to engagement in patient-centered research—time and money. All PCORnet® CRNs include patients on their steering or oversight committees as well as in the review and approval process of research projects. They also all maintain staff dedicated to overseeing their engagement strategies. The authors concluded that such infrastructure and established processes are important for engagement to be meaningful. To make the most of an engagement infrastructure, researchers should invest in mechanisms to reinforce it, including team training to navigate power dynamics and development of supportive environments that promote diversity and inclusion.

Engagement tactics in PCORnet aren’t one-size-fits-all. While engagement of patients in governance is a requirement of funding for all PCORnet® CRNs, the specific tactics were left to the individual networks to determine. Given the diverse settings and populations served by these networks, variation in specific practices is to be expected. Each CRN adopted distinct strategies. For example, the study team observed varied governance configurations, as well as distinct assets and services maintained by each CRN.

We need more engagement science research—and PCORnet could be key. While Network Partners have already published work related to their engagement in research, there is more to be done. The Network Partners’ experiences with tactics like community engagement studios, patient engagement panels, methods for prioritizing research topics, citizen scientist programs, and blended research teams could support comparative effectiveness studies that inform strategies for continuous quality improvement in engagement practices. The study’s authors see their publication as a stepping-stone toward such research, which could guide study teams in matching engagement strategies with known contextual factors.

“At the end of the day, we want patient-centered research to be the norm and not the exception,” said Cope. “To get there, we need to look at engagement through the lens of scientific rigor to understand what strategies work best in specific settings and across distinct audiences. PCORnet Network Partners have built a foundation that can deliver those answers, which will drive scaling and uptake of effective practices across future networks.”