Project Summary

The Engage for Equity (E2) PLUS study aims to improve policies and practices and the external reach of eight academic health centers (AHCs) that have Clinical Translation Research Centers toward the goal of strengthening patient and community leadership in research. The University of New Mexico Center for Participatory Research E2 research team will partner with each of the eight institutions in a mutual learning process and will create a Community of Practice of engaged universities and their partners by the end of the study to continue to transform how research is conducted. 

This E2 research team is building from its previous findings of best practices in partnering that contribute to equity outcomes as well as workshops and tools to strengthen partnering based on 17 years of its National Institutes of Health-funded Engage for Equity work. The research team is also building from its PCORI-funded Engagement Award that used E2 tools to assess the feasibility of institutional change that could lead to patient/community leadership. 

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 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, the first being to create working groups, working with champion teams, to advocate to the top leadership of these institutions for improved practices and policies that support patient-centeredness of research, including actions such as 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 a separate community and patient action group, with goals to extend outreach to patient and community networks and organizations to increase diversity of involved patients and to enhance interest by additional external organizations in collaborating and leading 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. Evidence of patient and community leadership would include: 

  • Greater influence of patients and community members in research decision making 
  • Greater 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 team’s Engagement Methods also include collecting data on the institutions from a new Institutional Multi-Stakeholder Survey that looks at climate and culture of the institution, the extent of practices and policies that support patient and communities engaged in research, and actions that can leverage change. Researchers also will interview top AHC leaders and conduct before and after focus groups of the champion teams, the patient/community action group members, and the staff and investigators of the community engagement core of the Clinical Translation Science Center. This data, deidentified to retain confidentiality, will be provided to each institution and its champion team so it can support actions for change. Data sharing and ownership agreements will be created to ensure ethical use of the data. 

The research team expect the results from these eight institutions to generate best engagement practices for AHCs. Finally, a national community of practice will be formed to spread learnings of best engagement practices to a wide set of patient advocate and community networks and academic research networks across the United States.

Project Information

Nina Wallerstein, Dr.Ph
Shannon Sanchez-Youngman, Ph.D.
University of New Mexico Health Sciences Center
$2,016,514 *

Key Dates

36 months *
April 2024
2024

*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.

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Last updated: April 23, 2024