Table 1.
Operationalization of community-engaged research principles
| Community-Engaged Research Principles | Operationalization in ISCCCE |
|---|---|
| 1. Be clear about the purposes or goals of the engagement effort and the populations and/or communities you want to engage | - MLCHC’s role as key I-Lab partner and connector to CHCs was defined prior to grant submission. - Incorporated engagement goals into ISCCE organization and leadership structure. |
| 2. Become knowledgeable about the community’s culture, economic conditions, social networks, political and power structures, norms and values, demographic trends, history, and experience with efforts by outside groups to engage it in various programs. Learn about the community’s perceptions of those initiating the engagement activities | - MPI had prior collaboration with MLCHC and understood its structures and priorities. - MPI and several co-investigators have extensive familiarity with CHC communities, populations, Community Health Needs Assessments, and cancer trends. - MLCHC provided active input on proposed work scope and budget. - MLCHC provides ongoing information about operating conditions of CHCs, priorities, and competing demands, concurrent initiatives, and opportunities to engage with CHC staff and leadership to develop first-hand knowledge and relationships. - MLCHC and the I-Lab Implementation Learning Community provide opportunities for bi-directional learning and feedback on what is working well and what needs reconsideration. - Investigators learn directly from CHC partners about their context and resources, in the process of partnering in pilot studies. |
| 3. Go to the community, establish relationships, build trust, work with the formal and informal leadership, and seek commitment from community organizations and leaders to create processes for mobilizing the community | - Trust was built through active engagement from start of grant writing & budget development. - Input on resources for CHCs suggested significant funding be provided, which was included in budget, with tradeoffs to the science team. - Partnership built on foundation of transparency (budget, titles, resources, etc.) and responsiveness (MPIs prioritized responding to partner queries, emails). - Partners’ input on how to support and engage CHCs was integrated into infrastructure and study design. - Offering flexibility and asking questions that seek to understand CHC strengths and resource constraints, acknowledge CHC challenges, and build trust. - MLCHC is a trusted partner that engages CHC leadership & staff in ISCCCE activities. |
| 4. Remember and accept that collective self-determination is the responsibility and right of all people in a community. No external entity should assume it can bestow on a community the power to act in its own self-interest (Community empowers itself) | - Partner CHCs determine if they wish to participate; an open call for all opportunities ensures self-selection and access. - MLCHC provides input on all study ideas, and we do not move projects forward that they do not think are viable or relevant to the CHCs. |
| 5. Partnering with the community is necessary to create change and improve health | - MLCHC is actively engaged in all decisions about pilot funding, and research activities. - MLCHC helps drive the implementation activities and ensures efficient integration into the workflow. - During implementation, the I-Lab’s partnership with CHCs may extend to modifications outside of the core activities, where scientifically appropriate and when aligned with CHC health goals. - Research projects have been designed to help CHCs gather needed information from their community partners, and to develop strategies to move that knowledge into action. |
| 6. All aspects of community engagement must recognize and respect the diversity of the community. Awareness of the various cultures of a community and other factors affecting diversity must be paramount in planning, designing, and implementing approaches to engaging a community | - We embrace diversity on many levels. From disciplinary perspective, we center our community partner’s input wherever possible, and have brought our MLCHC partners into the leadership team and into leadership (MPI) roles. - Leadership and staff in the CHCs often reflect the racial/ethnic diversity of the communities that they serve, which builds our understanding and awareness of community culture and needs. - CHC partners work with investigators to determine how core elements of interventions or implementation strategies can be modified or adapted to achieve fidelity while optimizing the fit in their context. |
| 7. Community engagement can only be sustained by identifying and mobilizing community assets and strengths and by developing the community’s capacity and resources to make decisions and take action | - Most ISCCCE pilots use a population management platform that is shared by the 32 participating CHCs. This allows us to build strategies and tools that can be sustained. - We have created mechanisms for capacity building related to implementation and two-way engagement with the study team. - We actively engage partners in grant writing, presentations and manuscripts to build their capacity and to enrich our understanding of the findings. - We provide mentoring and access to national training opportunities for CHC staff that wish to expand their research skills. - We engage partners as co-investigators on studies where there is interest. |
| 8. Organizations that wish to engage a community as well as individuals seeking to effect change must be prepared to release control of actions or interventions to the community and be flexible enough to meet its changing needs | - Our practice surveillance unit is led by our partners in order to ensure unbiased feedback. - Resources provided to CHCs that are participating in implementation studies are designed to be used as flexibly as possible. - A major part of our work is designing an adaptation process that allows CHCs to make changes to their implementation activities to address their priorities, needs, and resources. - We re-design and modify studies when emerging needs dictate a shift (e.g., the pandemic), as warranted by CHC interest. - We intentionally study adaptation, which allows us to further our understanding of how to address the tension between needed flexibility and scientific rigor. - We used new funding opportunities related to COVID to address a key community need. |
| 9. Community collaboration requires long-term commitment by the engaging organization and its partners | - We provide expertise in establishing a research infrastructure to the MLCHC, which is developing its own internal research capacity, leveraging the partnership to expand to areas outside of cancer equity. - We routinely meet with partners to identify new sources of funding and make joint decisions as to which opportunities to pursue. |
Adapted from Principles of Community Engagement. 2. Washington: US Department of Health and Human Services, 2011.
Abbreviations: MPI = multiple Principal Investigators, ISCCCE = Implementation Science Center for Cancer Control Equity, CHC = Community health center, I-Lab=Implementation Laboratory, MLCHC = Massachusetts League of Community Health Centers.