Operationalizing Community-Engaged Research Principles

Table 1 summarizes our efforts to operationalize the Principles of Community Engagement. The Principles reflect the grounding of community engagement in the principles of community organization, including fairness, justice, empowerment, participation, and self-determination.

Table 1.

Operationalization of community-engaged research principles

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.

Principle 1: Be clear about the purpose of the engagement. Our partnership with MLCHC was founded on a history of collaboration, largely focused on children’s health [Reference Fiechtner, Perkins and Biggs12–Reference Taveras, Perkins and Anand14]. When the opportunity for an effort related to cancer prevention and control became available, we immediately met with MLCHC to design a sustainable research partnership to address cancer equity and build CHC capacity for research. MLCHC had been leading efforts to support increased cancer screening, and it became clear that our interests were aligned and that there was an opportunity for two-way learning. Several of our ISCCCE design features were recommended by our partners, such as the use of a learning community, having MLCHC gather input on CHC staff perceptions of partnership quality, and designing an open and engaged process for identifying pilot research topics.

Principle 2: Become knowledgeable about the community. The MPIs had prior collaborations with MLCHC and with communities in which the CHCs are located and had conducted prior research in the CHC setting [Reference Fiechtner, Perkins and Biggs12,Reference Emmons, Cleghorn and Tellez15–Reference Taveras, Perkins and Boudreau20]. A key part of our structure is having routine contact with our partners so that we not only understood the community context at the outset, but that we were aware of emerging issues that impact the CHCs and their communities. Close communication during the COVID-19 pandemic allowed us to pivot our research activities to ensure that we were respectful of the pressures on the CHCs. We were able to apply for funding through the NIH Rapidly Accelerating Diagnostic Testing for COVID-19 in Underserved Populations (RADx-UP) mechanism, which supported testing expansion in partner CHCs, and allowed us to design implementation research to understand the circumstances that allow CHCs to respond to emerging public health crises [Reference Kruse, Pelton-Cairns and Taveras10].

Principle 3: Establish relationships and build trust. Despite our existing relationships, ISCCCE significantly ramped up the level of collaboration and engagement. There were new partners introduced into the existing relationships, and we needed to ensure that trust permeated all relationships. We worked to build trust from the very beginning of ISCCCE planning, grant writing and budget development, prioritizing transparency, and receiving active input from MLCHC on the work and the budget. For example, one recommendation from MLCHC was the provision of funding for the CHCs to support their participation in pilot studies. We co-developed principles for determining what level of support was needed and budgeted for these. Support is based on study requirements and typically provides $15,000 to $50,000 to each CHC participating in implementation pilots. In our RADx-UP grant, CHC deliverables were significantly greater than in other pilots, and thus we provided $375,000 per participating CHC over two years.

Our development of an Implementation Learning Community (ILC) has provided opportunities for direct engagement and relationship development and to showcase the efforts of CHC staff in pilots, all of which contribute to the development of trust. The ILC is comprised of quarterly meetings, hosted virtually to allow for broad participation, and online learning materials. Two-hour ILC meetings include ISCCCE progress and updates, presentations by pilot CHCs describing implementation successes and challenges, expert speakers, moderated panels of implementing teams and investigators, and facilitated group discussions to integrate the speaker or panel topics with local realities. A range of staff, from executive leadership to community health workers, are invited to participate. The discussions are co-facilitated by ISCCCE team members and CHC staff. Additional online learning tools include 1) an online learning platform sharing IS resources such as curated resources, ILC recordings, and ISCCCE products and publications; and 2) access to quality improvement coursework. The ILCs are bi-directional and have engaged agendas to provide a venue for building trust and research capacity.

Principle 4: Community empowers itself. Our operating practices have been designed to maximize CHC autonomy related to participation in the ISCCCE. For example, we adopted MLCHC’s recommendation for how we approach engaging CHCs in pilot studies, by offering open webinars that are hosted by MLCHC in which study opportunities are explained, and interested parties can ask questions and provide input. MLCHC sends a recording of the webinars to all CHC leaders and manages a streamlined application and review process for interested CHCs. This process enables interested CHCs to choose to participate rather than be repeatedly approached by individual investigators, and MLCHC “pre-vets” opportunities so that CHC leaders know that the MLCHC, their trusted partner, supports the work.

Our efforts to recognize and build on partner autonomy are also reflected in the structure of the Implementation Laboratory (I-Lab), which uses a tiered membership approach that allows CHCs to engage in implementation research according to their readiness (Fig. 2). Tier 1 CHCs are active pilot sites. Tier 2 CHCs receive financial support to allow staff and leadership to engage with the ILC to build capacity toward participation in the later pilots. Other CHCs that are not ready to actively engage in pilots are invited to participate as they are interested (Tier 3), with the goal of developing research readiness for the future. The tiers are fluid to accommodate changes in CHC interests, readiness, and capacity. For example, the number of Tier 1 CHCs increased from four in Year 1 to 14 in Year 3. Fig. 2 depicts the I-Lab membership and structure.

Fig. 2.

Implementation lab membership and infrastructure. CHC, community health center; EBI, evidence-based interventions.

Principle 5: Partnering with the community is necessary to create change. Our organizational structure places MLCHC at the leadership table. They actively engage in all decisions about pilot funding and research activities. Further, MLCHC helps drive all implementation activities; its Vice President of Clinical Health Affairs is a member of the I-Lab and is involved in designing and running ISCCCE implementation pilots. This integration of clinical leadership into the I-Lab has enabled us to enhance our learning on how to leverage quality improvement strategies in the context of IS and to respond more effectively to implementation barriers. Through our ILC, we are able to identify issues that the CHCs are struggling with and to partner directly with them to support action. For example, in RADx-UP, a key issue for the CHCs was to determine how best to partner with local community organizations as they ramped up COVID testing and outreached at-risk groups. In the fall of 2020, we conducted a rapid needs assessment that entailed 84 semi-structured qualitative interviews with 107 community health center staff, community partners, and community residents. We used a two-phase framework approach to analyze the data, including deductive coding to facilitate rapid analysis for action so that the CHCs could incorporate the learning into their testing strategy, followed later by an in-depth thematic analysis. The CHCs reported finding this approach extremely helpful in designing their testing outreach [Reference Lee, Handunge and Augenbraun9].

Principle 6: All aspects of community engagement must recognize and respect the diversity of the community. There are many aspects to diversity in the context of community-engaged research. First, there is disciplinary diversity, in that as scientists we must respect and honor the tacit and operational knowledge that community partners provide. We center MLCHC’s input through our leadership and operating structures. Second, there is contextual diversity, in that the resources and needs of each CHC are unique, and thus, a one-size fits all approach to engagement does not work. With MLCHC’s recommendation, we use a deliverables approach to budgeting with the CHCs, providing considerable flexibility in how they use the resources offered. We work with investigators to specify what elements of an implementation strategy or intervention require high fidelity and these are specified as deliverables. Then, we work with CHC partners on how core elements can be modified or adapted to achieve fidelity while optimizing the fit in their context. For example, a pilot study measuring an implementation strategy that bundled outreach for Fecal Immunochemical Testing (FIT) with screening for social needs was designed to have core functions and flexible forms in which those functions could be operationalized. The core fidelity elements included outreach to offer bundled screening and follow-up to promote FIT return. CHCs had the flexibility to choose how they followed up (e.g., by telephone, text, or letter) and who they prioritized for outreach according to their staffing models or programmatic priorities.

We also seek out opportunities to learn directly from CHC staff. Staff in the CHCs reflect the racial/ethnic diversity of the communities they serve, and many staff are residents of these same communities. We prioritize our learning directly from CHC staff to ensure that we build our understanding and awareness of community culture and needs.

We also aim to contribute to the diversity of the scientific community by creating an inclusive environment to support interns, students, postdocs, and junior faculty to advance their career development in community-engaged, equity-focused implementation research. The I-Lab hosts underrepresented student summer interns. We have career development opportunities for postdoctoral fellows and junior faculty who are underrepresented in medicine. The I-Lab also prioritizes hiring research staff from the communities we partner with. Inclusion of diverse staff and trainees allowed us to have broad language representation in the community needs assessment conducted for our RADx-UP project; interviews with community residents were conducted in English, Spanish, Vietnamese, and Arabic, reflecting populations served by participating CHCs.

Principle 7: Community engagement is sustained by identifying and mobilizing community assets and strengths and by developing community capacity and resources. We have benefitted significantly from the FQHC’s use of the population management and reporting platform, Data Reporting and Visualization System (DRVS), that enables them to submit required data to HRSA, and also provides extensive tools to track progress toward required quality measures. Thirty-two CHCs in MA utilize this EHR-agnostic system, which allows a systematic and standardized way to collect outcome data. We have prioritized interventions that can be implemented through the platform. The partnerships have applied for funding to interventions in DRVS that address cancer prevention and control needs and can be integrated into CHC workflows.

We actively invest in the human resources at our partner CHCs. For example, we supported participation of a CHC-based researcher and epidemiologist as a co-investigator in multiple research projects. We provide ongoing mentoring, as well as financial support for CHC researcher participation in a national IS training program. We have made community partner participation in publications and presentations a requirement for ISCCCE investigators, and several senior leaders at the CHCs have highlighted the value of this opportunity for their staff [Reference Lee, Handunge and Augenbraun9,Reference Kruse, Pelton-Cairns and Taveras10,Reference Aschbrenner, Kruse and Emmons21–Reference Gupta, Mohareb and Valdes23]. Partner contributions have enriched our ability to interpret and act on our findings, while building CHC capacity.

Our evaluation unit benefits from MLCHC’s support for data mapping, accuracy, and training. The research team has learned from the strategies that MLCHC uses to ensure data quality. We believe the benefits have been bi-directional; in that, our analysis of CHC data expands the way our partners typically approach their data, adding new knowledge and understanding of factors influencing outcomes. The evaluation team has developed a data ecosystem using REDCap [Reference Harris, Taylor and Minor24,Reference Harris, Taylor and Thielke25], a HIPAA-compliant data platform, that allows us to efficiently capture, store, and link multiple data types (e.g., qualitative, quantitative, administrative) from different sources (e.g., surveys, EHRs) over time, and, importantly, that enable us to rapidly access data to answer new and emerging questions using individual-, contextual-, and system-level data. Moreover, the upfront resource investment in designing and implementing such a data ecosystem lessens the burden on community partners to extract and review data on a case-by-case or project-by-project basis.

Principle 8: Community engagement requires a release of control of actions or interventions to the community and the flexibility to meet its changing needs. Our ongoing practice and partnership surveillance is overseen by our MLCHC partners, who are closest to the CHC’s work and in the best position to gather unbiased input from the CHCs. To provide feedback on our efforts to operationalize effective and equitable partnerships, MLCHC gathers input from CHC staff who have participated in pilot studies by administering an online survey that aims to understand their experience with the implementation research process (e.g., clarity and reasonableness of the requirements, experience carrying out the work) and partnership quality (Supplement Materials 1). MLCHC shares summaries of this data to inform improvements in partnership methods.

Summary data from CHC partners in our initial implementation pilot highlighted 1) needed improvements in I-Lab online coursework and the need for more robust onboarding when new CHC staff joined ongoing pilots; and 2) positive experiences with research partnerships such as the research requirements being clearly communicated and reasonable, the feasibility of implementation activities within regular health center workflows, and CHC staff feeling supported to deliver interventions and respected by the ISCCCE team for their knowledge and contributions.

Release of control to partners is also accomplished by including flexibility in our collaborations. For example, we were about to launch a pilot study in early 2020 focused on bundling breast and colorectal cancer screening when the pandemic hit. CHCs were inundated with COVID-related activities, but also trying to figure out how to deliver home-based care where possible and to address patient’s social needs. Driven by CHC priorities, the pilot was pivoted to study FIT testing, a home-based cancer screening strategy, and social needs screening and referral, as described above. In addition, a major activity within ISCCCE is the development of an adaptation process that supports CHCs to make changes to their implementation activities to address their local priorities, needs, and resources [Reference Aschbrenner, Kruse and Emmons21]. Developing dynamic implementation and adaptation strategies to fit emerging implementation challenges and evolving workflows increases the likelihood of sustainment [Reference Chambers, Glasgow and Stange26].

Principle 9: Community collaboration requires long-term commitment. We entered the partnership with MLCHC with the goal of developing a lasting infrastructure to support implementation of evidence-based cancer prevention and control interventions. We are working towards this goal by responding to as many funding opportunities that are of interest to our partners as possible and by actively engaging trainees in this work so that we can ensure a pipeline of investigators who are well-trained and committed to community-partnered research. We are also actively collaborating with MLCHC in the development of their own research infrastructure, The Health Equity Research and Policy Institute, which will support their long-term engagement in research. The ISCCCE MPIs serve on the search committee for the Institute Director and provide support to develop the Institute’s research infrastructure.