A new project at the University of New Mexico's Center of Participatory Research is underway to test engagement strategies in an effort to promote trustworthy academic institutions and greater diversity and capacity for patient and community leadership in research.
The Engage for Equity (E2) PLUS project, co-led by Distinguished Professor and the Director for Participatory Research Nina Wallerstein, and Associate Director Shannon Sanchez-Youngman, aims to transform Academic Health Center policies, practices and norms to strengthen commitment and resources for patient and community-engaged research. They will partner with eight institutions across the country, including the University of New Mexico, in a mutual learning process to create a Community of Practice of engaged universities and their partners to continue to transform how research is conducted.
Funded through a $2 million grant by the Patient Centered Outcomes Research Institute (PCORI), this scaled-up project is built on 18 years of identifying the best community-based participatory research practices at the project and partnership levels. The three-year project, from 9/2024-2027, will test strategies to increase patient and community leadership in research and build the necessary academic infrastructures to support the effort.
At UNM, this PCORI award will provide additional support for UNM’s reapplication to the Carnegie Foundation in 2025 for renewal of its classification as an Engaged University, as the leading framework for institutional recognition of community engagement in U.S. higher education for the past 14 years.
In this new E2PLUS study, the study team will form champion teams, co-led by an academic and patient/community partner and composed of community and patient leaders, researchers, practitioners and other stakeholders. The team will then provide coaching to the champion teams and several workshops using its E2 Tools for a larger set of stakeholders, including four community-/patient-engaged research projects, patient/community members from institutional community advisory boards, top AHC leaders, engaged investigators and other stakeholders.
Half of the workshop participants will be patient and community members, with a focus on underserved, diverse populations (African American, Latino, White, American Indian/Alaska Native, LGBTQ and rural communities and people from other marginalized identities).
“The goals of the workshops are twofold,” said Wallerstein. “The first is to create working groups with champion teams, to advocate to the top leadership of these institutions to improve their practices and policies that support community and patient-centeredness of research.”
These practices could include better financial arrangements for community and patient advocate partners, new IRB ethics processes that enhance benefit to communities and patients, and mutual training to support capacity building among all stakeholders.
“Second, the study team will form separate community and patient action groups,” said Wallerstein. The goals of the groups are to expand reach of the Academic Health Center to additional patient and community networks to increase diversity of external organizations with capacity to collaborate and lead research based on their own priorities.”
The E2PLUS Engagement Methods are grounded in deep participation of patients/community members to elevate their decision-making power and collective empowerment within academic health centers to promote patient and community leadership in research. Examples of patient and community leadership include:
- Greater influence of patients and community members in research decision-making
- Greater community and patient-centeredness of the research itself, from identifying priorities, through co-developing instruments, collecting data, and interpreting and acting on data that can improve policies, practices and programs for greater patient and community health
- Greater diversity and numbers of involved patients and community members in research
- Documented improved trustworthiness of the institutions by patients and community members
The findings from the Engage for Equity (E2) PLUS project will help inform best institutional and community-driven practices across the country for increasing research power of patients and communities with the goal of improved health equity.
For more information, visit Engage for Equity (E2) PLUS.