Introduction
At E4A, we’re interested in research that is conducted in service of communities. That means involving, collaborating with, and deferring to the community when setting the research agenda, conducting the research, disseminating the findings, and deciding on next steps (see page 2 on Facilitating Power’s Spectrum of Community Engagement to Ownership).
Over the last several months, we’ve been on a journey to better understand the conditions and strategies that can best support community engagement and improve equity in the research process. We’ve been sharing our learnings with you in a series of blog posts that began with an introductory post (here), and included discussions with Andrea Jones and Kenneth Wells on their use of the Community-Partnered Participatory Research (CPPR) approach (see the blog and full interview transcript); Harriett Yepa-Waquie and Nina Wallerstein on their use of the Community-Based Participatory Research (CBPR) approach (see the blog and full interview transcript); and Melody Goodman on the development of a tool to measure the quantity and quality of community engagement (see the blog and full interview transcript).
The frameworks of CPPR and CBPR share many of the same foundational principles around partnering with communities and sharing power (for more information on these two approaches see the sidebar). There are many strategies for identifying and building relationships with community partners outside of using a full CBPR or CPPR approach.
Melody Goodman discovered that even the act of evaluating the quantity and quality of community engagement can contribute to strengthening relationships and improving communication. Such evaluations can help provide benchmarks for the state of the partnership, as well as provide indicators of which factors/principles need more attention.
In all cases, community engagement is an iterative process to see what is working and what is not.
We highlight below learnings around three central themes of context, trust, and equity.
Context Matters
There isn’t a one size fits all approach when it comes to meaningfully engaging the community in research – strategies and tactics will really depend on the community and the cultural context. While academic researchers may have expertise in research methods and analysis, community members are unquestionably the experts when it comes to understanding the context in which interventions are happening and the real world implications for their community. Their lived experiences mean that they know what is valued in the community, they know what the pain points might be, they know how to approach and recruit others in the community, they know how to interpret the findings and share them with the community, and much more.
There are also structural differences that can impact the research process and the ways work is done with the community that can vary from place to place. This can include governing structures, local ordinances, the organizations and businesses present in the community, and many other factors. For example, Nina and Harriet spoke about the Native Institutional Review Boards (IRB) that are in place for some tribes, which work to ensure that there are concrete and lasting benefits to the tribal community and its members, unlike a traditional academic IRB which almost exclusively focuses on mitigating risk and harm to participants. As Andrea and Ken described, academic IRBs may or may not include community reviewers and perspectives. And even if they are present, their voice may be one of many and they may not have sufficient power to challenge the majority opinion. Researchers should aspire to considering the benefits to the communities they are working with, whether the IRB they are applying to considers that aspect or not.
Cultural and linguistic differences between and within communities often make it necessary to take a multi-faceted and iterative approach to identifying partners, as well as building trust and relationships.
Together, all of these considerations mean that academic researchers should take their cues from the experts - the community members.
Building Trust is Key
Throughout all of our conversations it became clear that trust is vital and should not be assumed from the beginning. Building trust with communities and community members, overcoming challenges from past experiences with extractive research or research that actively caused harm, can be challenging. For example, Ken and Andrea spoke to the need to overcome the reputation that UCLA had in the community during their CPPR work around depression. Nina and Harriet also spoke to the time it took to build trust between the academic researchers and what became the tribal research team, as well as for the tribal leadership and community to trust in the University of New Mexico as an institution.
During our conversation with Melody she shared that trust needs to be explicitly discussed and measured. When developing the Research Engagement Survey Tool (REST) through a Delphi process, it was initially assumed that trust was baked into many of the community engagement principles that they were considering measuring. However, throughout the process it became clear that trust was so vital that it should be elevated to be an explicit, standalone principle.
As we heard from all of our interviewees, building trust takes a lot of intention, time, and resources, as well as an authentic desire to share responsibility and power with community members. This can be challenging, as trust-building activities fall outside of the traditional academic research approach, meaning that funders and/or institutions may not support this work, let alone incentivize it. However, this does seem as though it may be changing, with some funders not only supporting community involvement but prioritizing or even requiring it.
Equitable & Consistent Support is Needed
In addition to supporting the time and effort on the part of the academic partners to establish these relationships, there needs to be equitable and consistent compensation for the time and expertise of community partners.
Achieving equity requires that institutions and funders make changes to the way research is done. Consistent support is needed to let communities know that they are partners for good.
Tools & Resources
Below is a list of all of the resources from the three previous blog posts, we encourage you to take a look:
From our conversation with Andrea Jones & Kenneth Wells:
- Community Partners in Care (CPIC)
- Commentary: 25 Years of Community Partnered Participatory Research
- Strategies for Academic and Clinician Engagement in Community-Participatory Partnered Research
- The Vision, Valley, and Victory of Community Engagement
From our conversation with Nina Wallerstein & Harriet Yepa-Waquie
- The CBPR model
- The University of New Mexico Center for Participatory Research
- Exploring theoretical mechanisms of community-engaged research
From our conversation with Melody Goodman:
- Evaluating community engagement in research: Quantitative measure development
- Reaching consensus on principles of stakeholder engagement in research
- Development and validation of a brief version of the research engagement survey tool
- A study examining the usefulness of a new measure of research engagement
Additional Resources:
- UCSF Clinical and Translation Science Institute’s Community-Engaged Research with Community-Based Organizations: A Resource Manual for Researchers
- Principles of Community Engagement from the Clinical and Translational Science Awards Consortium
- Tufts Clinical and Translational Science Institute’s Community Engagement Tools and Resources
- Empowerment Evaluation | Better Evaluation
- Practical Tips for Establishing Partnerships with Academic Researchers: A Resource Guide for Community-Based Organizations (nih.gov)