Exploring Challenges and Strategies in Partnering With Community-Based Organizations to Advance Intervention Development and Implementation With Older Adults

Abstract

Minoritized older adults face multiple health inequities and disparities, but are less likely to benefit from evidence-based health care interventions. With the increasing diversity of the U.S. aging population, there is a great promise for gerontology researchers to partner with racial/ethnic minority organizations and underrepresented communities to develop and implement evidence-based health interventions. Community-Based Participatory Research and Implementation Science offer guidance and strategies for researchers to develop and sustain community partnerships. However, researchers partnering with community organizations continue to face challenges in these collaborations, study outcomes, and sustainability. This may be especially true for those junior in their career trajectory or new to community-engaged research. The purpose of this forum article is to detail critical challenges that can affect gerontology researcher–community partnerships and relationships from the perspective of researchers. Seven challenges (pre- or mid-intervention design, implementation, and postimplementation phases) described within the Equity-focused Implementation Research for health programs framework are identified and discussed. Potential solutions are also presented. Planning for potential obstacles of the researcher–community partnerships can inform innovative solutions that will facilitate successful partnerships, thereby promoting the advancement of collaborative research between academic institutions and community organizations to improve older adult health outcomes.

Transfer of evidence into real-world practice lags far behind current evidence (Morris et al., 2011). Competing priorities in health care, as well as organizational and individual factors (e.g., lack of time, difficulty developing evidence-based guidelines, unsupportive organizational cultures), all affect research translation (Curtis et al., 2017). Issues of ideology (objectivity of science; tension between individual behavior and equality) also affect translation of health inequity research (Muntaner et al., 2012). Because adults aged 65 years and older are more likely to have multiple comorbidities (Centers for Disease Control and Prevention [CDC], 2020b), delays in translation of evidence-based interventions could be especially detrimental.

Racial/ethnic minority and older adults from marginalized communities face multiple health inequities and disparities. The majority of universities and researchers are not as diverse as the populations they wish to serve and therefore may not be well prepared to understand the needs and experiences of these communities. Consequently, racial/ethnic minority and other older adults from underrepresented communities are less likely to benefit from evidence-based health care interventions. Partnering with community-based organizations (CBOs; e.g., social service agencies and nonprofit organizations; CDC, 2020a) that serve underrepresented groups is essential to facilitate timely translation of effective health interventions.

Community-Based Participatory Research (CBPR) and Implementation Science provide strategies for catalyzing research translation in local contexts (Nilsen, 2015; Tabak et al., 2012). CBPR is a collaborative approach to establish structures for affected communities to participate in research through equitable division of power and resources (Minkler, 2005; Viswanathan et al., 2004; Wallerstein & Duran, 2006). CBPR can facilitate stakeholder engagement and translation to improve health outcomes and advance health equity (Allen et al., 2021; Goodman & Sanders Thompson, 2017; Jagosh et al., 2015; Winterbauer et al., 2016). Implementation science is the study of methods to promote the systematic uptake of evidence-based research findings into routine practice (Bauer et al., 2015). Implementation science offers the lens to identify contextual factors that influence whether interventions are adopted or not (Damschroder et al., 2009; Eslava-Schmalbach et al., 2019; Wiltsey Stirman et al., 2019).

CBPR and implementation science are receiving growing recognition. For example, the National Institute on Aging (NIA) funds 18 Resource Centers for Minority Aging Research (RCMAR), many of which include community engagement cores that embrace CBPR tenets (NIA, 2021). Furthermore, the NIA IMbedded Pragmatic Alzheimer’s Disease and Related Dementias Clinical Trials Collaboratory incorporates both CBPR and implementation science foci (Mitchell et al., 2020). With federal funding, the University of Wisconsin–Madison developed the Community–Academic Aging Research Network (CAARN) that has conducted 33 projects (Mahoney et al., 2020). These established partnerships offer examples that new ones can learn from and expand upon.

As researchers and communities continue to collaborate, knowledge about these partnerships is steadily growing. For example, a number of challenges in implementing CBPR have been identified: budgetary concerns (Viswanathan et al., 2004; Yang et al., 2019), community perceptions/expectations (Delman et al., 2019; Yang et al., 2019), staff turnover and staff training (Pillemer et al., 2003; Porteny et al., 2020), ethical approval/oversight (Giger et al., 2015; Strike et al., 2016), limited organizational resources (Giunta & Thomas, 2015; Porteny et al., 2020; Viswanathan et al., 2004), and unequal sharing of credit (Levin et al., 2021). However, discussions within the context of intervention research have been limited. Also, some researchers and communities—especially those junior in their career trajectory or new to community-engaged research—may be unaware of the challenges that may be encountered when engaging in a partnership and therefore are unable to adequately prepare to successfully engage in this process.

This article presents the authors’ diverse experiences in partnering with CBOs as principal investigator, research manager, interventionist, and/or research assistant on community-based intervention studies. Many of these organizations serve low-income racial/ethnic minority older adults and none had a preestablished/funded community–university partnership. To collate the researchers’ experiences, we had three focused discussions with 14 researchers to identify challenges, conducted a literature review to identify current evidence and potential solutions, held a focused discussion to revise the list, and conducted an iterative review to finalize challenges and solutions. We offer a description of seven challenges observed during researcher–community relationships from the perspective of the researcher. We apply a fictional case study of Dr. Honey, an Assistant Professor of Public Health at the University of Bee, who was recently awarded a grant from the National Institute on Aging. We draw upon our experiences to offer potential strategies/solutions (Supplementary Table 1).

Challenges in Researcher–Community Partnered Research and Application of a Case Study

In alignment with the state of the science, challenges in researcher–community partnered research are presented within phases of the Equity-focused Implementation Research for health programs (EquIR) framework. It incorporates social determinants of health with intersectoral strategies to inform equitable implementation of health programs. It has six steps including (a) identifying the health status of the population, (b) the planning phase, (c) the design phase, (d) the implementation phase, (e) the implementation outcomes phase, and (f) population health status (Eslava-Schmalbach et al., 2019). These steps are presented in a cyclical manner representing the continuous structure and function of the framework. Similar to the domains of EquIR, partnership challenges can occur in multiple phases of the intervention process, and discussion of a challenge within a specific phase is only to facilitate the flow of the presentation.

EquIR Step 1—Identify Population Health Status

As the starting point for interventions, identifying and understanding the current health status of the population is a major focus of this framework. A common challenge that gerontology researchers and community partners face during this phase is connecting to each other. The challenge of identifying a community partner begins during this phase.

Challenge 1—Identifying community partners

Dr. Honey proposed to work with community health workers (CHWs) at a Hispanic/Latinx CBO to deliver a trademarked home-based obesity reduction intervention for older adults. He was referred to this organization by a colleague acquainted with the previous director. The director offered Dr. Honey a letter of support during the grant application but left the organization prior to project implementation. Identifying and selecting community partners are critical parts of the researcher–community partnership and often overlooked. Community organizations are often created to meet a unique community health, social, or political need and therefore have a concrete understanding of the current status of the population. However, researcher exploration of population health status often occurs with limited community partner involvement, and/or many partnerships develop without including underrepresented racial/ethnic populations and older adults, which can perpetuate health disparities in these populations (Trickett et al., 2011).

There is a need for researchers to think outside of the box and engage in “nontraditional partnerships.” Mingo and Baker (2015) defined nontraditional partners as agencies, organizations, community groups that are not considered early adopters, oversaturated with requests, or often selected for convenience alone. For instance, sororities and fraternities have been suggested as examples of nontraditional community partners (Mingo et al., 2016). In addition to sororities and fraternities, several authors have partnered with immigrant country of origin organizations. However, nontraditional community partners from underrepresented communities may have limited resources and/or may not be as familiar with the research process and ways to foster mutual goal attainment. Initiating and sustaining this type of partnership may take more time than usual, but developing relationships with nontraditional partners expands the community connections of aging researchers, and may reap rewards in reaching underrepresented racial/ethnic populations and sustaining collaborations over time (Mingo et al., 2016; Mingo & Baker, 2015).

Identifying and maintaining good working relationships with community partners will enable effective recruitment and retention of diverse older adults into research. During the identification process, long-term considerations (e.g., collaborations, increasing uptake, connections with the target audience; Gitlin & Czaja, 2015) have to be made to ensure that the partnership will meet both partners’ end goals. When possible, researchers should explore partnerships through established networks such as CAARN and RCMAR. Because Dr. Honey’s work with this CBO may be a partnership of convenience, long-term sustainability may be an issue. As noted in CBPR and EquIR, for sustainability and effectiveness, identification of the researcher and community partners should occur in the context of understanding the health status/health inequities faced by the specific community. By doing this, researchers will be conducting research that is informed by and with the community.

EquIR Step 2—Planning Phase

In this step, activities include defining the research question and how it will affect the target population, quantifying the actual inequity (i.e., the process of developing a research question, identifying unique components of a new intervention, or identifying an existing evidence-based intervention for adaptation with this community). The challenge of understanding the perceptions and values of community partners/researchers can begin during this phase.

Challenge 2—Community perceptions and values

In preparing to submit the project to the Institutional Review Board (IRB), Dr. Honey faced some uncertainty about which CHWs on staff at the CBO to add to the IRB submission. Additionally, he realized that the new director of the CBO was more interested in the funds than in answering the research question outlined in the grant. As such, the director contemplated redirecting staff time from Dr. Honey’s grant to other programs deemed more important. In community-partnered projects, perceptions (of the researcher or community partner) and expectations of systems, research, and the community are critical to the project’s success and continued collaborations. In racial/ethnic minority communities, historical incidences of research injustices still influence trust and participation in research. Opportunities to foster successful partnerships (e.g., trust, communication, respect, shared responsibilities, sharing of strengths and expertise, appropriate ratio of benefit to risk) should be clearly established at the beginning with the exploration of current population health status incorporated throughout (Arora et al., 2015). While equity, collaboration, co-learning, and capacity building are recognized as key principles, how these principles are perceived and enacted is context-bound and may vary according to regional location, cultural differences, race/ethnicity, age, and resource access. An example of shared values is noted when one of the authors partnered with a local organization whose mission was to serve low-income older adults with home repairs in order to conduct a novel intervention study that included home modifications (Szanton et al., 2019). Both the community partner and researcher had a shared goal of providing home modifications to improve function in low-income older adults.

Also, differences in stated and unstated values of the researchers and community partners can present partnership challenges during project implementation. Community partners may be unaware of common intervention norms and study designs such as using control groups, in which vulnerable older adults do not receive the full treatment being tested. Researchers’ desire to achieve the highest quality evidence may conflict with the need to provide care to all community members. A wait-list control or cross-over design may be useful in these circumstances. More difficult circumstances can occur when time is an added competing pressure. For example, most health journals embargo press attention about findings prior to publication. This means that community groups may need to wait 1–2 years postcompletion of research before publicizing the work—slowing the dissemination of knowledge to community members who can benefit most from these evidence-based programs.

Clarity surrounding perceptions, expectations, and values of all partners concerning the vision and mission, perceived action(s) required, and amount/duration/penetration (geographic bounding) of change should be determined at the outset of a partnership (Roussos & Fawcett, 2000). Perceptions and expectations regarding leadership and available support systems for the partnership, progress markers and indicators of effectiveness, accountability, and successes should also be solicited from all (Roussos & Fawcett, 2000) and implemented throughout the partnership. From interviews with community organizations, Giunta and Thomas (2015) highlighted the need for continuous formative (organizational processes) and summative (outputs and outcomes) evaluation that utilizes different methods and shared resources during a researcher–community partnership (Giunta & Thomas, 2015).

EquIR Step 3—Design Phase

In this phase, the implementation team ascertains key actors and barriers that will affect the equity-focused intervention that has been identified for implementation. Challenges that could begin during this stage include ethical approval/oversight and budgetary concerns.

Challenge 3—Ethical approval and oversight

Ethical approval prior to research implementation is traditional for research projects; however, this might be a foreign concept to some community partners. Anderson et al. (2012) identified ethical and educational needs of academic researchers, community partners, and IRB members as a challenge to conducting community-based research. Community partners often do not have stand-alone IRBs and therefore researchers depend on the university IRB for ethical review. University IRBs often require researchers to present a clear research protocol that includes everyone involved in the research for ethical approval prior to the start of the project. Changes in organizational structure and staffing in community organizations can lead to frequently adding and removing individuals from the study protocol. The roles of community members on the research team should be clearly identified to ensure that everyone involved in the research has taken the necessary ethics courses and is added to the IRB approval prior to study initiation. Depending on the study, researchers may need to begin Phase 1 with an IRB-exempt protocol planning approval before working with the community partner to finalize the study protocol. Ideally, partnerships should be initiated early on, so that the development of the research protocol and IRB application can be done jointly by researchers and community partners. Additionally, there is a need for the inclusion of more community members on university IRBs and increased capacity building to facilitate community partner education around IRB protocols and/or development of their own IRBs. Furthermore, unlike cross-sectional studies, intervention research with older adults (a vulnerable research population) involves many study visits and data collection time points and often includes more components of IRB review and approval. Therefore, any partnership challenges that affect the IRB process could potentially disrupt the study timeline. After all regulatory approvals were obtained, the intervention was initiated. Not long afterwards, the partnership hit another snag. The intervention being tested was developed for African American older adults, but now included a large group of Hispanic immigrants. Feedback from the CHWs highlighted cultural differences in motivations underlying eating behaviors of immigrants that were different from those of U.S.-born populations. Dr. Honey and the team took a step back, collectively revised the intervention program, and retrained all of the interventionists, which led to successful implementation of the study. The team carefully documented all the changes that were made to the intervention during the process of cultural adaptation.

Challenge 4—Budgetary concerns

Limited budgets pose challenges for these partnerships, especially for lower-resourced communities (Caldwell et al., 2015; Porteny et al., 2020; Viswanathan et al., 2004). Researchers and community partners may barter or share financial, material, labor, and human capital resources to ameliorate budgetary gaps and enhance the capacity for both organizations (Caldwell et al., 2015). However, three budgetary challenges remain. First, researchers have to reliably quantify the value of the community partner’s contributions when applying for grants. For example, partners should be compensated for time and effort participating in research meetings (Dobransky-Fasiska et al., 2009) and other tasks that fall outside their typical scope of work. However, the value of intangible contributions such as community trust, social capital, or insider perspective that are critical to the success of the project is not easily quantifiable and may be undervalued if partners are simply reimbursed for the marketplace value of time spent on the project. Second, once an intervention has been developed, researchers usually implement projects within existing community operations. Although it is gradually changing, many successful researcher–community partnerships rely on research funding for the academic partner and programmatic funding for the community partner (Tan et al., 2014). Combining different funding sources in one project can pose a challenge to partnering relationships because of disparate expectations, deliverable requirements, and budgetary oversight differences of the research and programmatic funders (Drahota et al., 2016; Pechura, 2006). The authors describe different scenarios where partnerships ended abruptly/halted after the funding ended, which is not ideal for maintaining relationships, especially for community partners with limited budgets. Partnerships are more likely to be sustained if a financial sustainability plan based on diverse funding sources is in place (Hunter et al., 2015; Nadeem & Ringle, 2016). Therefore, partners should work to develop a financial plan early in the relationship and implement it over time to ensure that the project is sustained even after the grant ends or in the event the research partnership dissolves.

EquIR Step 4—Implementation

This step involves resources and incentives, implementing strategies to overcome the health challenges of the older adult population, communication of these strategies, and the monitoring and evaluation of these actions. During this phase, the following challenges may arise: community partner staffing and intellectual property (IP) rights.

Challenge 5—Ownership and IP

The success of the revised intervention brought a lot of media attention—researchers from other states began contacting Dr. Honey about testing this adapted intervention with their local Hispanic/Latinx immigrant communities. He decided to work with the school’s IP office to trademark the new intervention component. He was informed that the school would not share the rights of development with the CBO. Developing a clear understanding of what, when, and how to identify scholarly work with gerontology researchers and community partners as IP is important. “Some universities have sought to make their ownership of all faculty patent rights a condition of employment, citing the use of university facilities as a justification for asserting their ownership” (American Association of University Professors, 2013). This perspective may present a scenario where the community partner’s role is not incorporated in IP/patent rights. IP and ownership rights discussions should begin at the start, during exploration of partner expectations, continue throughout the partnership, and should be included in the legal contracts and scope of work. Developing a checklist of best practices to guide researchers can be beneficial during intervention development and negotiations with the community partner. As an example, Stanford University (2012) developed “Best Practices for Faculty Start-up” that includes faculty roles, responsibilities, pipelining, and options on licensing agreements. This model presents one approach for researchers who work with community partners, enabling inventors to succeed in translating “start-up” work to other communities. Ideally, within CBPR, the researcher, community partner, and community should get equal credit for research products that were developed during partnered research. Luckily, when Dr. Honey met with the director of the organization, she was not worried about IP rights. She was proud that her organization was the program testing site. They discussed ideas for sustaining their partnership; the director also asked if Dr. Honey could mentor some of her staff who were interested in pursuing higher education to become researchers.

Challenge 6—Community partner staffing

Though often related to budgetary requirements and funding, changes in staff and program direction of a community partner present another challenge for researchers during a planned or current partnership. Turnover and use of float or casual pools have been identified as barriers to research implementation (Chuang et al., 2017; Sulek et al., 2017; Vlaeyen et al., 2017). Problems associated with high staff turnover and inconsistent staffing include low expectations for delivery and modifications to protocols, potentially compromising intervention fidelity (Sulek et al., 2017). Staff turnover and time for staff to attend trainings balanced against other job pressures can also have an impact on staff training, creating a need to offer multiple introductory training sessions to new staff, in addition to ongoing training for veteran staff (Chuang et al., 2017; Vlaeyen et al., 2017). Many of the authors have reported disruptions in research activities during community partner staff turnover. Developing a “train the trainer” model and streamlining research procedures could improve research sustainability (Porteny et al., 2020).

Turnover in community partners’ leadership can have a significant impact on the research process and partnerships. As noted in the EquIR framework, the researcher and community partner can address turnover through continuous formative and summative evaluation, documenting potential challenges, and identifying potential solutions and resources needed. Frequent meetings and shared staff could facilitate a successful partnership even during staff/leadership turnover (Lindamer et al., 2009).

EquIR Step 5—Implementation Outcomes

Monitoring the outcome of the program occurs during this phase including coverage of the intervention, cost, fidelity, and feasibility of the study. Assessment of the appropriateness of the intervention for the affected population and dissemination plans are developed during this time. A challenge that can arise during this phase is sustainability. Implementation of EquIR Step 5 leads directly back to Step 1 where the current health status of the target population is again evaluated in the context of the newly implemented project.

Challenge 7—Sustainability

One of the challenges of partnership sustainability is how to navigate the time-limited funding structure under which many researcher–community partnerships are formed (Lyon et al., 2011). Extension of funding to foster and sustain partnerships is rarely granted, and research partnerships rarely last longer than 3–5 years (Alexander et al., 2003). Some research suggests that determining and planning for sustainability is project-specific and can range from maintaining the partnership as a functioning organizational structure to simply maintaining the partner organization’s initiatives (Schensul, 2009). Three dimensions to maintaining relationships with community partners include sustaining relationships, knowledge/capacity, and funding (Israel et al., 2006). Contrary to the current norm of engaging community partners during the grant cycle, researchers should be encouraged to develop and nurture long-term relationships with community organizations that share similar interest and expertise. Although the goal is to nurture long-term equitable partnerships, researchers and community partners should also be prepared to amicably terminate a partnership if necessary.

Conclusion

The process of engaging community partners and people with lived experiences to implement interventions represents a departure from “research-as-usual.” Thus the researcher–community partnership is dynamic and numerous challenges can arise for both researchers and the community organizations during this process. As shown in Dr. Honey’s case, challenges could be related to identifying and connecting with a community partner, understanding the partner’s perceptions and values, staff turnover, or determining IP rights. Practical suggestions through review of a case study allow academic–community partners to reflect, plan, and address challenges from design to sustainability of older adult health intervention research. Awareness of these challenges can promote early partner engagement, ongoing relationship building, and facilitate a focus on pragmatic solutions which, in turn, can decrease conflict.

Utilizing a framework such as EqUIR that integrates activities within an intervention’s life cycle can enable anticipation of potential challenges with the understanding that challenges can present themselves differently throughout different phases of a project or through different projects with the same partners. Yet, adequate preparation, continuous communication, and ongoing evaluation can inform successful partnerships and implementation of each intervention. Although this article identifies issues from researchers’ perspective, understanding partnerships from the community partners’ perspective is equally important and warrants current and future exploration. We hope this article serves to stimulate discussion and advance understanding of the process of researcher (academic)–community partnerships in gerontological intervention research.

Funding

M. Nkimbeng was supported by the Robert L. Kane Endowed Chair at the University of Minnesota School of Public Health and by the National Institute on Aging (1F31AG057166-01). This research was also supported by funding from the Johns Hopkins Alzheimer’s Disease Resource Center for Minority Aging Research (1 P30 AG 059298).

Conflict of Interest

The authors declare no conflicts of interest.