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Community-based participatory research.

Michael Duke Michael Duke University of California San Francisco
https://doi.org/10.1093/acrefore/9780190854584.013.225
Published online: 19 November 2020

Community-based participatory research (CBPR) refers to a methodological and epistemological approach to applied community projects in which researchers and community members collaborate as equals in the research process. Also known as participatory action research (PAR), CBPR has gained considerable acceptance both as a set of methods for identifying and addressing local issues of concern and as a vehicle for applying the principles of equity, cultural humility, mutual learning, and social justice to the relationships between researchers and communities. Although somewhat distinct from applied anthropology, CBPR shares with ethnography in particular an attentiveness to rapport building and community engagement and an overall validation of local knowledge. There is little consensus regarding the threshold of community participation necessary for a given research project to be considered CBPR. However, at a minimum the approach requires that community members define the problems to be assessed, provide consultation on the cultural and social dimensions of the study population, and serve in an advisory capacity over the entire project. The history of CBPR and its antecedents reflects its twin values as a pragmatic approach to researching and addressing local problems and as an emancipatory social justice project that seeks to diminish the hierarchical relationship between researchers and community members. Specifically, the pragmatic perspective was developed in the United States by social psychologist Kurt Lewin in the 1930s (and subsequently by the anthropologists Laura Thompson and Sol Tax), while the emancipatory approach derives from the work of educational theorist Paulo Freire in Brazil in the 1970s. Community Advisory Boards (CABs) play an outsized role in the success of CBPR projects, since they typically represent the community in these studies, and thus maintain oversight over all aspects of the research process, including the study design, sampling and recruitment protocols, and the dissemination of findings. Accordingly, nurturing and maintaining trust between researchers, the CAB, and the community constitutes a foundational practice for any CBPR study.

participatory action research
engaged scholarship
communities
social justice
research methods

Introduction

Community-based participatory research (CBPR) refers to research activities carried out in local settings in which community members actively collaborate with professionally trained researchers. CBPR is not linked to a particular academic field, but is instead utilized in a range of disciplines, particularly in the health and social sciences, community development, the humanities, and regional planning.

In applied anthropology and ethnography more generally, community studies nearly always involve some level of local involvement (e.g., working with gatekeepers to facilitate access to the target population). Furthermore, CBPR shares with ethnography both an emphasis on rapport-building as a central component of the research enterprise and an attentiveness to the collective perspectives and cultural understandings of community members (Arenas-Monreal, Cortez-Lugo, and Parada-Toro 2011 ; Batallan, Dente, and Ritta 2017 ). What distinguishes CBPR, however, is that community members provide critical oversight over these studies and participate actively in one or more aspects of the research process. These activities may include developing the study questions, designing the methodology, collecting data, and contributing to and disseminating the study findings (Balakrishnan and Claiborne 2017 ). Another way of considering the distinction between ethnography from CBPR, according to Cartwright and Schow ( 2016 ), is that while the conceptual focus of ethnography relies on the notion of the ethnographer gaining knowledge of a community setting by actively participating in the daily life of that community, in CBPR the goal is for community members to serve as participants in the research process.

Principles Characterizing CBPR

Regardless of discipline, characterizing CBPR precisely is challenging, at least in part because there is little consensus regarding the threshold of community participation necessary for a given research project to be considered CBPR. At a bare minimum, CBPR requires that community members define the problems to be assessed, provide consultation on the cultural and social dimensions of the study population, and, perhaps most critically, serve in an advisory capacity over the entire project, typically in the form of a community advisory board (Hacker 2013 ). Nonetheless, in a frequently cited review of the field, Israel and colleagues (Israel et al. 1998 ) identified several principles that should ideally characterize all CBPR initiatives. These principles include:

the recognition that community is recognized as a unit of identity;

drawing from community strengths and resources;

facilitating equitable partnerships and power-sharing arrangements;

promoting co-learning and capacity building among all partners;

achieving a mutually beneficial balance between research and action;

developing and maintaining partnerships through a cyclical and iterative process;

involving all partners in project dissemination; and sharing a long-term commitment to partnership sustainability.

Subsequently recognizing that the lion’s share of research occurs in community settings that are socially and economically marginalized, Israel and her colleagues, in a 2018 publication, identified an additional principle of CBPR: that the latter directly addresses issues of race, racism, and social class. As such, CBPR partners must strive to achieve the types of self-critique and self-reflection that together constitute cultural humility (Israel et al. 2018 ).

It is worth noting that, apart from ongoing engagement between researchers and community members, CBPR is not tied to any particular methodological approach. It is true that CBPR frequently includes a qualitative component. This emphasis is largely due to qualitative research’s epistemological emphasis on intersubjective knowledge creation and its methodological focus on capturing the thoughts, beliefs, and behaviors of participants through their own words and actions (Peralta and Murphy 2016 ). However, CBPR does not preclude the use of surveys, biological samples (bioassays), or other forms of quantitative data collection, provided that the community is actively engaged in those methodological decisions.

Collaboration between Researchers and the Community

The reasons for researchers and community members working collaboratively vary widely but tend to fall into two broad and overlapping categories. The first rationale is largely pragmatic, namely, that for some applied studies, methodologically sound community-researcher collaborations can yield more robust, contextualized data than projects where community member roles are limited to being research subjects (Calderón et al. 2018 ; Goodman, Thompson, and Hood 2018 ). An important reason why the outcome of CBPR projects tends to be so fruitful is because the participation of community collaborators as advisors and research team members may increase the participation of community members in the study and, at the end of the project, play a critical role in disseminating the study findings. More importantly, for applied studies in particular, community members in the aggregate typically possess intimate knowledge of the causes and consequences of the problems that afflict them and are therefore uniquely qualified for collaborating actively in formulating research questions and crafting study designs (Wallerstein et al. 2018 ). As a result, CBPR studies tend to provide multiple opportunities for documenting and interpreting local knowledge regarding community concerns and assets, as well as the experiences of community members. This understanding is important because it increases the likelihood that community members will support the study results and that the findings will be put to use for creating initiatives that bring about sustainable change. Last, CBPR provides opportunities for mutual capacity and skill building, harnessing financial resources for the community, and providing training and internship opportunities for students (Hacker 2013 ).

The second rationale for researchers and community members choosing to work together is based on principles of equity and social justice. In particular, CBPR is predicated on the idea that community members—who may be economically or socially marginalized—are experts in the conditions that affect them and the cultural and linguistic worlds in which they reside. From this perspective, CBPR has the effect of diminishing the hierarchical relationship between university-trained researchers and the communities with whom they work, quite apart from the research approach’s utility in answering particular research questions (Batallan et al. 2017 ; Dhungel et al. 2019 ; Vásquez-Fernández et al. 2018 ). Muhammad and colleagues ( 2014 ) go further, positing that CBPR cannot be successfully applied unless equal power relations are intentionally identified and addressed. The benefits of attending to these power relations are not only necessary for the successful implementation and completion of the project, but can have an emancipatory impact on both community members and research teams:

When the essential ideals of CBPR are faithfully adhered to, the community is better able to free itself from the social structural factors that have historically silenced its voices of concern and marginalized its aspirations for hope (i.e., colonization, racism, sexism, and economic exploitation). The academic researcher may likewise find release from personal and cultural biases that can develop through the achieved status of rigorous academic training; and through the ascribed status arising from individual power, privilege, and prestige accruing as an academic researcher. (Muhammad et al. 2014 , 1058)

Historical Development of Community-Based Participatory Research

The twin values of pragmatism and equity are reflected in the history of participatory research activities such that these values are sometimes considered to be distinct conceptual approaches to this method. Action research, a methodological and epistemological precursor to community-based participatory research (CBPR), is generally considered to have originated with Kurt Lewin, a social psychologist whose research beginning in the late 1930s focused on testing the impact of democratic participation in factories and community settings (Adelman 1993 ; Lewin 1946 ). These projects were notable for bringing together Lewin and his students, on the one hand, and members of the study population, on the other, to participate collaboratively in solving practical problems through the use of data. Although Lewin’s approach was subsequently put into practice by applied researchers in a number of disciplines, Laura Thompson is likely the first anthropologist to utilize this approach explicitly in her project on facilitating change in Hopi governance (Thompson 1950 ; Van Willigen 2002 ) (fig. 1 ).

Figure 1. Laura Thompson.

As an extension of action research, action anthropology developed largely through the so-called Fox Project, a University of Chicago field school among the Mesquakie people in rural Iowa led by Sol Tax. Largely through the influence of Tax’s students, the project was noteworthy for addressing issues of community self-determination, in part through the Mesquakie participating as co-investigators (Gearing 1988 ; Tax 1960 ).

Beginning in the 1970s, the term “action research” began to fall into disuse in favor of “participatory action research” and (somewhat later) “community-based participatory research.” In part, these shifts are semantic, emphasizing the participatory nature of the research enterprise. In addition, the change in nomenclature corresponded to a growing concern among researchers with foregrounding the structural conditions and relations of power that impact communities—including the power dynamics inherent to the research enterprise itself—and redefining the location of expert knowledge as residing in local communities. This latter perspective was strongly influenced by Brazilian educator Paulo Freire’s influential concept of emancipator research (Freire [1970] 2018 ).

Friere’s approach stems from the assumption that, through facilitation by researchers, local communities can develop a critical consciousness regarding their material conditions. They can then harness that consciousness and the requisite knowledge that they already possess to formulate collective solutions to problems caused by these conditions. Emblematic of this approach is Columbian sociologist Orlando Fals Borda’s long-term collaborative history project with the Asociación Nacional de Usuarios Campesinos (National Association of Tenant Farmers) on the country’s Caribbean coast. Fals Borda’s methodologically innovative approach to rewriting the history of the peasantry collaboratively “from below” resulted in Historia Doble de la Costa , an important four-volume work (Borda 2008 ; Robles Lomeli and Rappaport 2018 ). Some commentators have suggested that Lewin and Freire represent the two dominant historical strands of collaborative research: one developed in the Global North and focused on projects whose goal is to promote consensus and utilitarian solutions to local problems, the other developed in the Global South and concerned with collective research studies as vehicles for emancipation and for developing a critical consciousness of one’s experience (Hacker 2013 ; Wallerstein et al. 2018 ). These approaches are rarely mutually exclusive, however, as nearly all contemporary CBPR projects grapple at least implicitly with issues of power while engaging in solutions-focused projects that address community issues of interest.

Researchers, Communities, and Institutions

Academic research institutions represent important sites of power and often have an outsized impact—whether positive or negative—on the communities and regions in which they are embedded. As an important subcategory of community-based participatory research (CBPR), engaged scholarship seeks to create mutually beneficial partnerships between these institutions and local communities (Fitzgerald, Allen, and Roberts 2010 ). 1 Engaged scholarship utilizes the same methodological and epistemological approaches as other CBPR approaches. Engaged scholarship, however, is distinct in at least two ways. First, engaged scholarship researchers are formally affiliated with academic institutions, while CBPR investigators may be employed outside of university settings. Second, while CBPR emphasizes collaborative relationships between individual researchers (or teams of researchers) and communities, a particular focus of engaged scholarship is to promote linkages between academic institutions and communities. The primary goal of these linkages is to facilitate community-engaged research, civic engagement, community development, service learning, and improving community health and well-being (Norris-Tirrell, Lambert-Pennington, and Hyland 2010 ). Indicative of the growing acceptance of engaged scholarship—and by extension CBPR—in academic institutions is the fact that these approaches have entered the Carnegie classification system for universities (Giles, Sandmann, and Saltmarsh 2010 ) (fig. 2 ).

Figure 2. Katherine Lambert-Pennington and a farmer from Santa Maria di Licodia talk about water and irrigation practices past and present during the “Rural-Ability” Community Environmental Planning and Development (CoPED) program in June 2018.

There is a tendency in CBPR and engaged scholarship literatures to view these approaches as bridging two distinct, mutually exclusive worlds: those of the researchers and those of the communities in which they work. And, indeed, researchers’ and community members’ motivations, goals, and rewards relative to the research process may be quite different. For investigators, the research may provide a vehicle for obtaining grant funding, providing data for publications, and facilitating tenure or other forms of job promotion; for community members, in contrast, the research may be seen as a mechanism for understanding local issues of concern in-depth and for using the resulting data in grant applications to address that issue (Hacker 2013 ; Muhammad et al. 2014 ).

However, while it is true that the positions of researchers and community members are often distinct, a growing number of academically trained researchers come from the same historically marginalized underrepresented groups that characterize the communities where CBPR takes place and have therefore incorporated culturally salient methodologies into these studies (Chilisa 2012 ; Tuhiwai Smith 2012 ). Furthermore, CBPR study designs often include training community members as researchers, further blurring the distinction between the investigator and the local population. For example, CBPR approaches like photovoice, journaling, and similar methodologies in which community members are trained to document and reflect upon particular social, structural, or public health-related issues serve to democratize the research process by incorporating community members into the research team (Batallan et al. 2017 ; Schensul 2014 ; Sitter 2017 ). 2 Finally, in much of the literature focusing on the distinction between researchers and community members, the researchers are typically characterized as being employed in academic settings. However, Schensul points to the proliferation of third-sector scientists (anthropologists and other social researchers working outside of university settings) and community-based research organizations, both of which call into question the notion of the university as the sole site of scientific production and dissemination (Schensul 2010 ).

The question of how a community is conceptualized and demarcated both emically and etically has long been a pressing issue for anthropologists and others who carry out research with local populations. This interest stems from the fact that communities, which may seem relatively homogeneous to outsiders, often contain substantial internal diversity which can, in turn, manifest in factionalism or other forms of division. This issue is even more acute for CBPR (Blumenthal 2011 ), since aligning a research project with a particular community faction may unintentionally exacerbate inequality within that community (Minkler 2004 ; Mitchell and Baker 2005 ). Furthermore, the proliferation of online communities and other electronic forms of communication—and the forms of identity that emerge from them—have effectively decoupled the relationship between communities and specific geographic spaces (Balakrishnan and Claiborne 2017 ). Given that community spaces may no longer be synonymous with particular localities and because social beings identify with multiple communities based on affect, affiliation, or shared interest, Israel and colleagues utilize the term “communities of identity” to refer to those populations with whom CBPR approaches seek to engage and collaborate (Israel et al. 2018 ).

Community Advisory Boards in Community-Based Participatory Research Practice

In community-based participatory research (CBPR) approaches, the community is typically represented by a coalition such as a community advisory board (CAB) (Blumenthal 2011 ). CABs serve a number of purposes. First, members of the CAB function as the interface between researchers and the community. In this respect, they act as the de facto community representatives for the project and are responsible for providing the critical oversight necessary to ensure that community wishes and expectations are met (Morris 2011 ). Second, as people with deep knowledge of the community, cultural and social resources they hold, and the problems they face, CABs serve as expert panels (LeCompte et al. 1999 ). Third, in their capacity as key informants or local experts, CAB members play a substantial role in working with the researcher to identify the problems that need to be addressed and in developing study questions and methodological approaches for understanding those problems (LeCompte et al. 1999 ). Fourth, among the most important roles of CABs is identifying potential research participants and facilitating their recruitment into the study (Hacker 2013 ). Relatedly, CAB members can help identify the presence and location of community members who have particular demographic or other salient characteristics of the target population, including those who are otherwise hard to reach (Flicker, Guta, and Travers 2018 ). Also, to the extent that CAB members have credibility in the community, their service in an advisory capacity gives the study local credibility, which increases the likelihood of participation. Last, the CAB plays an important role in the dissemination of the project findings within the community and in the development of an action plan that may result from the study conclusions (Lopez et al. 2017 ).

Building trust between researchers, the CAB, and the community constitutes a foundational practice for any CBPR study, particularly in cases where communities have had negative experiences with researchers or institutions where they work (Andrews, Ybarra, and Matthews 2013 ). However, the processes that lead to relationships of trust and mutual respect are poorly understood, in part due to a tendency in the literature to view trust in binary terms. This tendency is unfortunate, since the development and nurturance of mutually respectful and beneficial relationships between communities and researchers are arguably the cornerstone for any community-based research project. In response to this concern, Lucero and colleagues offer an evidence-based typology of trust in community–researcher partnerships (Lucero, Wright, and Reese 2018 , 63) (Table 1 ). Rather than being static, the model reflects the fact that levels of trust do not necessarily begin with an absence of trust and that levels of trust may change over time. The model therefore serves as a tool for members of these partnerships to reflect critically upon the degree of trust present at any given moment in the project and to be proactive in seeking opportunities to foster and maintain mutual trust.

Table 1. Trust Typology Model with Characteristics

Trust types	Characteristics
Critical-reflexive trust	Trust is at the place where mistakes and other issues resulting from differences can be talked about and resolved.
Proxy trust	Partner is trusted because someone who is trusted invited them.
Functional trust	Partners are working together for a specific purpose and time frame, but mistrust may still be present.
Neutral trust	Partners are getting to know each other; there is neither trust nor distrust.
Role-based trust	Trust is based on a member’s title or role, with limited or no direct interaction.
Trust deficit (suspicion)	Partnership members do not trust each other.

Source : Lucero et al. ( 2018 , 63).

Because of the critical relationship between CABs and researchers in CBPR projects and the importance of trust in sustaining these partnerships, the format and facilitation of those meetings and other forms of internal communication are especially important (Andrews et al. 2010 ). However, best practices regarding communication have been only sporadically documented (see Newman et al. 2011 ). An important strategy entails incorporating open discussions between the researcher and the CAB regarding the structure, purpose, intention, and processes of communication. This strategy is particularly pertinent to formal meetings, which can otherwise have the unintended effect of perpetuating hierarchical relationships between researchers and community members (Newman et al. 2011 ). For this reason, collectively developing and approving meeting agendas to ensure that the topics for discussion address issues of concern for all members of the partnership, including formal opportunities for rapport-building, is a useful strategy. Furthermore, it is important to identify a facilitator from within the group who can ensure that attendees feel free to speak candidly and that the issues raised by partnership members are adequately addressed.

Community-based participatory research (CBPR) is based fundamentally on principles of reciprocity, equity, and collaboration, which distinguishes it from other forms of social research. It is therefore predicated not only on the ethical treatment of research participants—which is the goal of most research involving human beings—but on engendering social justice, empowerment, and egalitarianism at the community level through the research process itself. CBPR is not immune from ethical concerns, however. In part, these concerns are structural, since institutional review boards—which assess ethical issues in scientific research—are often poorly equipped to address the fluid and emergent interactions and approaches that tend to characterize CBPR. More directly, because CBPR, like ethnography, depends so strongly on rapport and relationship-building interactions and activities, scholars are beginning to focus on the everyday ethics of CBPR (Banks et al. 2013 ; Flicker et al. 2018 ). Banks and colleagues, for example, identify six broad themes pertaining to the ethical challenges of CBPR:

Partnership, collaboration, and power (i.e., the ways in which research partnerships are established, power is distributed, and control is exercised);

Blurring role boundaries (i.e., between researcher and researched, academic and activist);

Community rights, conflict, and democratic representation (i.e., the ethical challenges of defining community);

Ownership and dissemination of data, findings, and publications (i.e., who takes credit for the findings, and how should the findings be disseminated?);

Anonymity, privacy, and confidentiality (i.e., when community members collect and analyze research from their neighbors);

Institutional ethical review processes (which typically draw sharp distinctions between researchers and participants and assume that the researcher is in charge of the research enterprise) (Banks et al. 2013 ).

Each of these dimensions is important to consider because the consequences of failing to mindfully reflect upon the ethical questions that are more or less unique to CBPR during each stage of the research can ultimately have a detrimental impact on the partnership, the community, and the project itself (Minkler 2004 ). As Eikeland observes:

(W)ho is to be involved; how and why; who makes decisions and how; whose interpretations are to prevail and why; how do we write about and publish on people involved; who owns the ideas developed; etc. . . .The consequences of letting such questions pass unattended may be—intended or not—the spontaneous, habitual emergence of subtle power structures on a micro-level, not clearly visible in the beginning, but accumulating and “petrifying” over time into larger unwanted patterns. (Eikeland 2006 , 39)

Barriers to Successful Community-Based Participatory Research Projects

Although community-based participatory research (CBPR) provides a fertile conceptual and methodological framework for collaboratively directed community research, advocacy, and development, the approach also contains several impediments that have prevented the approach from being as widespread as it may otherwise be. Chief among these are time and money (Brydon-Miller 2008 ; Giles and Giles 2012 ; Lake and Wendland 2018 ). Establishing and maintaining successful collaborative relationships between researchers and community members can be time-consuming, especially initially when bonds of mutual trust may be at their most fragile. Apart from those relatively few universities that are deeply committed to the principles of engaged scholarship, academic institutions rarely reward, much less acknowledge, these time commitments (Arrieta et al. 2017 ; Giles and Giles 2012 ). Conversely, community-based organizations (CBOs) are often understaffed and their personnel strapped for time in attending to immediate community needs. It can therefore be difficult for CBO leaders and staff to invest the time to establish authentic partnerships without outside researchers. Furthermore, grant funding rarely provides resources for partnership development, nor for funding efforts to collaboratively develop research questions and methodologies; on the contrary, a tightly structured research design at the time of submission is nearly always a requirement for successful grant applications. Furthermore, research funders almost invariably recognize the lead investigator’s institution as the fiscal agent, with community organizations assigned the role of subcontractor. This fiscal arrangement not only reinforces the unequal status of CBOs relative to academic institutions (Lake and Wendland 2018 ), but makes the latter in a sense dependent on the university and its bureaucratic processes for reimbursement. Last, although community–researcher partnerships are the key to successful CBPR projects, they are difficult to maintain after the funding for a particular project has ended. Although some institutions offer bridge funding to researchers who are between projects, these resources are seldom available to community collaborators, making it all the more difficult for the latter to participate actively in partnership maintenance and new project development.

In addition to barriers related to time and resources, CBPR, like ethnography, has been the subject of several forms of critique. First, despite the fact that the value if this approach is increasingly recognized by funders and scholars in multiple disciplines, CBPR can be perceived as lacking objectivity because representatives of the community in which the study takes place actively collaborate in the research. However, Calderón and colleagues argue that successful CBPR projects must be at least as rigorous as more traditional approaches in order to advance the community-oriented social justice agendas that are among the key goals of these projects (Calderón et al. 2018 ). A second critique, again shared with those of ethnography, is that CBPR studies lack external validity in the sense that the findings may not be generalizable to other community settings (Hacker 2013 ). However, Wallerstein and Duran note that CBPR can facilitate the external validity of existing interventions since community members and researchers partner to adapt those interventions to local cultural, social, and political contexts (Wallerstein and Duran 2010 ).

Despite its numerous challenges, community-based participatory research (CBPR) provides a valuable theoretical, epistemological, and methodological framework for communities and researchers to document and interpret local issues of concern collectively and in-depth, and to use that information to develop community-driven initiatives for addressing these problems. Equally important, CBPR offers a transformative approach to community engagement and to researcher–community partnerships in particular by reducing the hierarchical relationships between research institutions and local communities and situating the research itself as an arena for dialogue, reflection, mutual learning, and social action. Put another way, CBPR may be considered not only a methodological and epistemological approach to understanding the issues facing community members, but a social movement to democratize knowledge production on a global scale (Schensul 2010 ). As a field that likewise privileges local knowledge and considers community members to be content experts, anthropology provides a fertile ground for the development and advancement of these critical approaches. Because of this shared perspective and because of the growing acceptance of this approach by funders, researchers, and community members themselves, students preparing for a career as applied anthropologists would be well-advised to seek out opportunities to incorporate CBPR into their theoretical and methodological toolkits.

Community-Based Participatory Research: Insights, Challenges, and Successes From the Perspectives of Frontline Recruiters and Investigators

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Employment of community-based participatory research (CBPR) strategies has helped address limitations of traditional research approaches, but we still do not have a full understanding of how study teams successfully conduct research with populations who experience health disparities. To gain insights into the unique successes and challenges of research teams conducting National Institutes of Health (NIH) funded community-engaged research studies, we conducted an online survey with 120 investigators identified through NIH RePORTER and 106 members of the academic study team (research staff) who assisted with recruitment. We examined descriptive statistics and used Chi-square analysis to compare responses between investigators and staff. Most studies targeted low-income, racial/ethnic minority populations and reported high recruitment and retention rates. The most common collaborators were community-based organizations, and the most common study purpose was to evaluate an intervention. There was generally consensus between investigators and staff about effective recruitment and retention strategies, barriers, and facilitators. However, there were also some critical differences, including perceptions about community partner roles and the value of staff input into study design and methods. After the presentation of our key findings, we share best practices for successful recruitment and retention in health disparities research using CBPR approaches.

Introduction

Socially disadvantaged populations experience a significantly greater burden of disease and have fewer opportunities to achieve and maintain good health (Braveman & Gottlieb , 2014) . Research informing effective interventions to decrease health disparities is imperative, but recruitment for these studies is particularly challenging because they often target high-risk populations that are less likely to participate in research due to inadequate or ineffective outreach strategies, mistrust, fear of stigma or potential harm, cultural factors, lack of awareness of research opportunities, competing priorities, and other barriers (Bonevski et al. , 2014) . Thus, one crucial part of this work is having a better understanding of effective recruitment and retention strategies for these diverse populations.

There are several limitations to traditional research approaches when targeting populations that experience health disparities and inequities. First, traditional approaches usually lack consideration of complex health conditions, understanding of individual and family needs and motivations, and cultural considerations that can impact health outcomes (Berge et al. , 2009; Domecq et al. , 2014; Holkup et al. , 2004; Horowitz et al. , 2009) . Further, a lack of research transparency and a historically limited focus on local needs may contribute to poor recruitment and retention of underserved populations (Nyden , 2003) .

Community-engaged research aims to address some of these limitations and spans a continuum from consultation to coordination to true collaboration (Goodman & Sanders Thompson , 2017) . Community-based participatory research (CBPR) is a partnership research approach in which community members, organizational representatives, and researchers contribute their expertise to research to improve health outcomes and quality of life and affect positive community change (Salimi et al. , 2012; Tapp et al. , 2013) . CBPR helps address the limitations of more traditional research approaches, often by adopting innovative strategies for study recruitment and retention that are informed by the whole research team. Previous review studies have examined strategies for recruitment and retention of populations that experience health disparities. One systematic review that examined the relative effectiveness of strategies for recruiting individuals from racial/ethnic minority backgrounds concluded that the active involvement of existing community stakeholders was critical (Yancey et al. , 2006) . Another systematic review of strategies for improving research with socially disadvantaged groups similarly found that researchers often collaborate with trusted community organizations to engage these groups (Bonevski et al. , 2014) . Finally, a systematic review of clinical trials that employed CBPR methodologies found that more than 75% of these studies successfully recruited and retained racial/ethnic minority populations and achieved significant intervention effects on clinical and behavioral outcomes (De las Nueces et al. , 2012) .

Strategies for recruitment and retention of study participants in CBPR studies are often informed not only by community partners, but also by research staff (i.e., recruiters, research assistants, coordinators, and project managers) working on the frontlines who have more interactions with potential study participants and hold unique perspectives about how to engage and retain participants. However, these strategies may not be fully understood and implemented in research communities because published literature is often written from the perspective of investigators (i.e., principal investigators, co-investigators, and project/program directors). In our review of the literature, we could find no evidence of research staff contributions in this area and therefore may be missing key insights from recruiters and other staff. Identification of recruitment and retention opportunities, challenges, and successes from both research staff and investigators’ perspectives may be important in increasing the success and impact of future studies. Community organizations and stakeholders are recognized as important gatekeepers between investigators and research participants (Bonevski et al. , 2014) . Research staff may also play this pivotal role, and understanding how they are solicited for input may be critical to refining research processes. The aim of this study was to obtain key insights from investigators and research staff involved with recruitment about challenges and successes they have experienced in using CBPR for recruitment and retention of populations experiencing health disparities. Our study objectives were to:

Conduct surveys to assess and compare recruitment and retention challenges and successes from the perspectives of research staff and investigators.

Assess the level to which research staff are invited to contribute their ideas to improve recruitment and retention.

Share best practices for successful recruitment and retention using CBPR.

Survey Development

As the focus of this study was to obtain feedback from academic members of study teams in different roles, our team included investigators, project managers, and clinical research coordinators. For the purposes of this survey, CBPR was defined as a research approach in which researchers and community members collaborate as equals in the research process, while community-engaged research was the broader term used to describe a research process in which groups of people affiliated by geographic proximity, special interests, or similar situations worked collaboratively. We first identified potential survey domains and questions based on the literature review and the expertise of our team members. Key domains included study approach, study purpose/scope, target population characteristics, community collaborators, recruitment goals, recruitment barriers and facilitators, qualities of successful recruiters, staff training and support, incorporation of staff feedback, retention rates, factors impacting retention, and respondent demographics. We pilot-tested the survey with research faculty and staff at our institution. We then entered the survey on SurveyMonkey.com and created two separate links: one for research staff and one for investigators.

Recruitment

We aimed to recruit investigators and research staff involved in ongoing CBPR studies or studies using other forms of community-engaged research methods funded by the National Institutes of Health (NIH). We compiled a list of eligible studies by searching funded studies on the NIH RePORTER website using the search terms “community-based participatory research,” “community-based research,” and “community-engaged research.” Study team members then manually reviewed project abstracts to select projects that used CBPR or other community-engaged research methods and included populations experiencing health disparities. We identified eligible studies and invited all principal investigators to participate and to identify co-investigators and research staff for outreach. We asked potential participants eligibility questions to ensure that they met our inclusion criteria. Participants had to be ≥ 18 years at the time of consent, part of a research team for at least six months (not on a per diem basis), able to read/write in English, and be without cognitive or physical impairments that would preclude completion of the survey.

We emailed study principal investigators (PIs), invited them to complete the online survey, and asked them to forward the survey link to co-investigators and senior collaborators. Because there is no centralized database with contact information for research staff, we also asked PIs to forward an email with a separate survey link to staff involved with study recruitment or to provide staff contact information so that we could send the link to them directly. Once participants clicked on the link, they were directed to a cover page where they were required to click “Consent” to continue with the survey. After survey completion, participants were asked to submit their e-mail addresses for distribution of incentives ($20 electronic gift cards). Not submitting a valid email address did not disqualify individuals from participating but prevented them from receiving compensation. We did not ask participants for their name, other identifiers, or protected health information. We received ethical approval for the study from our Institutional Review Board (IRB) (the Program for the Protection of Human Subjects) (approval # 05-0463).

Data Analysis

Descriptive statistics including means, standard deviations, frequencies, and percentages were used to describe the study participants. Given the distribution of some of the variables with some cell count sizes being too small for comparative analyses, answer options were collapsed in order to make valid statistical comparisons. Chi-square statistics were used to make group comparisons. All statistical tests were two-sided, and the significance level was set at 0.05. All analyses were performed using SAS 9.4 (SAS Institute Inc., Cary, NC).

Characteristics of Survey Respondents

We identified 119 eligible studies based on our search criteria and project abstract review. The 226 completed surveys included 120 (53%) investigator surveys and 106 (47%) research staff surveys. Characteristics of survey respondents are presented in Table 1 .

	Research Staff N=106	Investigators N=120	p
Age	42 ± 11	50 ± 11	<.0001
Gender			0.0003
Male	9 (10%)	31 (32%)
Female	80 (90%)	66 (68%)
Race/Ethnicity			0.0009
White	18 (20%)	46 (47%)
Black	32 (36%)	18 (19%)
Hispanic	20 (22%)	12 (12%)
Asian/Pacific Islander/Native	10 (11%)	13 (13%)
Other	9 (10%)	8 (8%)
Language Spoken Other than English
Spanish	27 (25%)	20 (17%)	0.1389
Other	8 (8%)	13 (11%)	0.4932
Years of Experience			<.0001
< 1 Year	6 (7%)	3 (3%)
1-2 Years	10 (11%)	5 (5%)
2-5 Years	30 (34%)	14 (14%)
5-10 Years	22 (25%)	22 (23%)
> 10 Years	21 (24%)	53 (55%)
Number of Studies			<.0001
1-3	37 (42%)	4 (4%)
4-6	26 (29%)	14 (14%)
7-9	8 (9%)	21 (22%)
10+	18 (20%)	58 (60%)
Role			-
Principal investigator		84 (87%)
Co-Investigator		9 (9%)
Program/Project director		4 (4%)
Project manager	39 (43%)
Project coordinator	34 (38%)
Full/Part time recruiter	14 (16%)
Other	3 (3%)

There were significant differences between investigators and research staff in age, gender, race/ethnicity, years of experience, and number of studies in which they were involved. Of note, nearly half the investigators self-reported their race/ethnicity as white compared to only 20% of the research staff. Of those who completed the investigator survey, 55% had more than 10 years of experience in their current role, and 60% had worked on 10 or more research studies. Of those completing the research staff survey, 41% were project managers, 38% were research coordinators, and 16% were full- or part-time recruiters. About half of the research staff had fewer than five years of experience in their current role.

Study Information

According to the investigator survey, 68% of the studies used a CBPR approach, 22% used a community-engaged research approach, and 9% were studies conducted in community settings. Study purpose included screening (detection of disease or disease risk) (19%); intervention (implementing treatments or strategies to improve outcomes) (77%); and assessment (collection of information from study participants through surveys, medical records, biologic measurements, etc.) (38%). The most common assessments included surveys (88%), in-depth interviews/focus groups (68%), biological measurements (35%), and laboratory tests (30%), with fewer studies including imaging tests (3%), medical record abstractions (19%), and environmental data collection (23%). In terms of collaboration during study development, 82% of investigators reported working with community-based organizations, 41% with community-based clinics, 29% with faith-based organizations, and 19% with schools. Other collaborators included city/state agencies such as health departments, American Indian tribes/organizations/governments, community members, housing developments, businesses, patients, and health providers. Investigators and staff had different perceptions about the stages of research in which community collaborators were involved. While most investigators reported high levels of community involvement in all stages of research except grant writing and data analysis, most research staff only perceived high levels of community involvement in recruitment ( Table 2 ).

	Research Staff	Investigators	p-value
Recruiting subjects	87 (82%)	102 (85%)	0.5921
Designing study methods/procedures	50 (47%)	93 (78%)	<.0001
Collecting data	62 (58%)	85 (71%)	0.0689
Planning for data collection after grant is awarded	37 (35%)	85 (71%)	<.0001
Developing an intervention	52 (49%)	85 (71%)	0.001
Disseminating research findings	48 (45%)	88 (73%)	<.0001
Developing a strategy for disseminating results	41 (39%)	79 (66%)	<.0001
Deciding what to study	38 (36%)	67 (56%)	0.0026
Writing grant application	31 (29%)	53 (44%)	0.0205
Interpreting results	32 (30%)	79 (66%)	<.0001
Analyzing data	22 (21%)	37 (31%)	0.0963

Studies included mostly female participants (reported by 61% of investigators) or an even distribution of males and females (reported by 36% of investigators). Most studies included adults ages 30–65 years and 83% of studies targeted racial/ethnic minority populations. The most common racial/ethnic minority groups included were Black/African American (58%) and Hispanic/Latino American (46%) with fewer studies including American Indian/Alaska Natives (14%) and other minority groups. Other than English, the most common language spoken by study participants was Spanish (in about half the studies), though individual studies included speakers of many different languages (European, Asian, African, and Native/indigenous dialects). The most common included populations that experience health disparities were low-income (81%), non-English speaking (37%), minors (30%), and the elderly (28%), with far fewer including populations such as adults unable to consent, pregnant women, physically/mentally disabled, or homeless individuals. The most common setting for studies was urban (71%) followed by rural (38%) and suburban (22%). Target U.S. geographic regions included the Northeast (29%), South (33%), Midwest (24%), and West (23%).

Recruitment Goals

Reported recruitment goals ranged from 15 to 5,000, with a median of 350 (IQR 200-600). About two-thirds of respondents reported that recruitment was complete and one-third reported that recruitment was ongoing. While nearly two-thirds of investigators reported that they met their initial recruitment goal, about 40% of respondents reported that their recruitment goals changed over time. Respondents were asked an open-ended question about reasons for changes in recruitment goals. Commonly cited reasons included statistical/data considerations, adjustments to the study protocol, recruitment/retention challenges, and funding issues. Most changes resulted in a smaller recruitment goal over time, but some respondents reported that recruitment levels exceeded expectations and increased their recruitment target or revised/added studies.

Recruitment Facilitators

Investigators perceived recruiters/staff and involvement of community-based/faith-based organizations to be the most important factors in facilitating study recruitment, while research staff perceived recruiters/staff as the single most important factor. Other factors ranked highly in importance by both groups included adequate financial incentives and accommodation of potential participants (e.g., flexible times or location close to home or work). Factors that were not perceived to be as important were advertisements, enrollment of participants’ friends or family members, and involvement of neighborhood medical clinics.

Investigators and research staff were asked to rank important qualities of a successful recruiter. Among the top qualities chosen by both investigators and staff were the ability to engage participants, belonging to the same cultural/ethnic background as the study population, living in the community, being comfortable in the community, being knowledgeable about the study and the community, having strong communication skills, and being charismatic/friendly. An additional quality deemed important by investigators was having previous experience with CBPR/community-engaged studies. Staff identified the ability to multitask as an additional important skill.

Recruitment Barriers

Only about 29% of investigators reported that they were not able to meet recruitment deadlines. Respondents were then asked an open-ended question about reasons for being unable to meet deadlines. Reasons cited included high no-show rates, poor access to recruitment sites, difficulty recruiting in certain sites, shortened grant timelines, recruitment taking longer than expected, financial difficulties among study participants, adjustments to the study protocol, IRB issues, staff turnover, and season/weather.

When asked how difficult it was to recruit participants, 46% of investigators said it was somewhat or very difficult compared to 60% of research staff, p=0.048. The top two factors perceived by both investigators and research staff to deter people from enrolling in studies were time commitment and lack of interest in research participation. Other commonly cited deterrents were competing demands, “don’t see personal benefit to be gained,” “don’t care to participate in research,” transportation issues, mistrust of research, poor understanding of the study components and/or requirements, and lack of knowledge about the research topic. As seen in Table 3 , investigators were more likely than research staff to identify transportation and competing demands as recruitment barriers, while staff were more likely than investigators to identify time commitment as a barrier.

	Research Staff	Investigators	p-⁠value
Lack of knowledge about the research topic and/or disease	25 (24%)	21 (18%)	0.2569
Time commitment	80 (75%)	76 (63%)	0.0489
Poor understanding of the study components and/or requirements	27 (25%)	19 (16%)	0.0725
Lack of interest in research participation	51 (48%)	57 (49%)	0.9266
Transportation issues/limited mobility	21 (20%)	41 (34%)	0.0158
Competing demands	45 (42%)	67 (56%)	0.0447
Don’t see personal benefit to be gained	35 (33%)	34 (28%)	0.4453
Don’t care to participate in research	30 (28%)	36 (30%)	0.7793
Mistrust of research	27 (25%)	35 (29%)	0.5344

Factors that were not perceived to be barriers were unwillingness to enroll unless guaranteed to receive the intervention, fear of finding out about health risk/disease status, physical impairment, revelation of undocumented status, dislike/distrust of the research team or institution, and literacy/religious/cultural/language issues.

In addition, at least 25% of investigators and staff felt that high turnover/shortage of staff and inadequate time to meet recruitment goals made recruitment somewhat or very difficult. Research staff — but not investigators — also felt that lack of community engagement and limited inclusion criteria were significant barriers. Factors less likely to be perceived as barriers included inadequate training of staff, inability to relate to the target community, inability to communicate in the participants’ language, lack of safety/comfort in the field, lack of familiarity with the recruitment site, rules of the recruitment site, competing studies in the area, inflexible times to accommodate study participants, limited staff knowledge of the study to answer participants’ questions, inadequate stipends/incentives, and time needed to obtain informed consent. When asked about strategies implemented to overcome recruitment barriers, the most commonly reported were combining recruitment with community events, obtaining referrals from friends and family, obtaining referrals from community partners, encouraging participants to tell others about the program, and structuring recruitment during off-peak times.

Staff Training, Support, and Feedback

About 77% of research staff received one or more days of training to develop recruitment skills. Commonly reported training techniques included observation and feedback, roleplaying, reading protocol materials, and working with experienced recruiters. Seventy-three percent of investigators reported that they always or often provided guidance/support for their research staff to overcome recruitment difficulties while 67% of the research staff reported that they always or often received such support. Most investigators (68%) met with their research staff every one to two weeks.

Investigators reported that they solicited feedback from research staff about the study prior to the start of the study (65%), during the study (81%), and after study completion (44%). When research staff were asked at what point their feedback was solicited, 57% said this occurred during the study while fewer reported that this occurred prior to the start of the study (26%) or after study completion (7%). When asked about the extent to which research staff input was incorporated into the study, more investigators than staff reported that this happened “very much” (86% vs. 60%, p<.0001). More investigators than research staff also reported that staff input resulted in a change in the study protocol (64% vs. 40%, p=0.0002). Respondents were asked an open-ended question about specific changes made to the protocol as a result of staff input. Reported changes included more flexible recruitment and study visit schedules, improved communication with potential study participants, expansion of recruitment sites, changes in study personnel and their roles, revision of consenting procedures, alteration of inclusion/eligibility criteria, simplification of protocol logistics, changes to the study intervention, providing better incentives, and obtaining more participant feedback.

The most commonly reported highest retention rate was 81-90%, and the most commonly reported lowest retention rate was 61–70%. About 75% of the studies included multiple follow-up assessments, with most of those occurring between 3 and 12 months after enrollment. We asked respondents to rate the degree to which particular strategies impacted retention. Factors considered by investigators and research staff to “very much” impact retention included: accommodation of participants (e.g. flexible times, home visits, location, and adequate transportation to research site) (80%); having a positive view of the study (78%); relationships with the study team (75%); perceived benefit of the study (74%); adequate financial incentives (59%); regular phone calls from study staff (55%); and involvement of community-based and/or faith-based organizations (52%).

CBPR studies rely on community stakeholders to inform study development and implementation, including effective recruitment and retention strategies. While process evaluations to assess the CBPR process rightfully include important perspectives from community partners, they do not often explore viewpoints from different members of the study team (Caldwell et al. , 2015; Horowitz et al. , 2009) . We recruited study investigators and other academic members of the study team who were involved in NIH-funded CBPR studies or studies using other forms of community-engaged research. Research staff were more racially/ethnically diverse than investigators, which might be relevant as staff are often on the frontlines in communities leading study recruitment efforts. Indeed, most studies aimed to recruit racially and ethnically minoritized populations and reported high recruitment and retention rates. The most common collaborators were community-based organizations and the most common study purpose was to evaluate an intervention.

Study investigators and research staff mostly agreed about effective recruitment strategies and facilitators. For example, both groups reported that adequate financial incentives, flexibility in study visit timing and location, involvement of community-based organizations, and having the right recruiters were the most important factors in facilitating study recruitment. Our findings align with previous studies that have similarly recognized the importance of collaboration with key community stakeholders to gain unique insights about the community, develop appropriate strategies to access potential study participants, establish trust and rapport, engage in shared decision making, and build capacity (Fortune et al. , 2010; Harvey et al. , 2009; Ibrahim & Sidani , 2014; Kamanda et al. , 2013; Pakhale et al. , 2016; Redwood et al. , 2010; Rhodes et al. , 2018; Savage et al. , 2006; Sheikhattari et al. , 2016; Tanjasiri et al. , 2011 , 2015) . These prior studies also emphasize the importance of providing appropriate compensation/incentives, employing ethnically and culturally diverse staff from the local community and from backgrounds similar to those of potential study participants, and having staff who form personal connections and are persistent, flexible, and accommodating (Fortune et al. , 2010; Harvey et al. , 2009; Ibrahim & Sidani , 2014; Kamanda et al. , 2013; Pakhale et al. , 2016; Redwood et al. , 2010; Rhodes et al. , 2018; Savage et al. , 2006; Sheikhattari et al. , 2016; Tanjasiri et al. , 2011 , 2015) . In addition to these factors, we obtained more detailed information than previous studies from both the investigator and research staff perspective about other specific qualities of successful recruiters.

Study investigators and research staff also provided similar reasons for being unable to meet recruitment deadlines and mostly agreed on important recruitment barriers. Similar to findings from a systematic review about recruitment of socially disadvantaged groups (Bonevski et al. , 2014) , the investigators and research staff who participated in our study identified lack of trust in research, lack of perceived benefit for participation, lack of understanding of research, and limited inclusion criteria as recruitment barriers. Additional perceived barriers in our study included transportation/mobility issues, lack of knowledge about the disease/research topic, and high turnover/inadequate recruiters. However, the most important barriers identified by both investigators and research staff in our study but not mentioned in the prior systematic review (Bonevski et al. , 2014) were time commitment, competing demands, and a simple lack of interest in research participation. Also, unlike the prior systematic review (Bonevski et al. , 2014) , we did not identify the following factors as significant recruitment barriers: fear of authority, perceived harms of research, mistreatment/exploitation, cultural beliefs, gender roles, age-related issues, stigma/fear, and poor communication about research from health care providers. Because CBPR is grounded in equitable collaboration with stakeholders who have an intimate knowledge of their community, building on community strengths and assets, and building trust, it is likely that the use of CBPR approaches addresses many of these previously identified barriers related to fear, cultural issues, and lack of familiarity with the local community (Israel et al. , 1998 , 2005) .

Investigators and research staff also largely agreed on factors that impacted retention. Similar to other studies, they cited the importance of having a convenient day/time and location for study activities, the flexibility of study staff, collection of extensive contact information and frequent outreach to study participants, adequate compensation for participation, having a positive view of the study, and perceived benefit of the study (Bonevski et al. , 2014; Rhodes et al. , 2018) . In addition to these factors, investigators and staff in our study identified other important factors for successful retention including having strong relationships with the study team and involvement of community-based and/or faith-based organizations.

There were some notable differences in investigator and research staff survey responses in this study. First, investigators and staff had different perceptions about involvement of community collaborators, with investigators reporting that community partners were involved in most stages of the research while staff only perceived high levels of community involvement in recruitment. Our findings align with those from a systematic review of CBPR clinical trials which found that most studies reported community involvement in identifying study questions, recruitment, intervention development and delivery, data collection, and formation of community advisory committees, but very few of the studies cited community involvement in interpretation or dissemination of findings (De las Nueces et al. , 2012) . Lower levels of community involvement with grant writing, data analysis, and dissemination of research findings may be due to community partners having less knowledge and experience in these areas (De las Nueces et al. , 2012) . We hypothesize that there were varying perspectives about community involvement between investigators and staff because investigators often have strong, long-standing relationships with community collaborators, work with them on multiple research projects, and interact with them regularly during grant applications, at stakeholder board meetings, and throughout the research process. On the other hand, while research staff know the community, are comfortable with the community, and may be from similar backgrounds as community members, they may not regularly engage with specific community-based organizations outside of the recruitment process.

The other major difference between investigator and research staff survey responses was related to the extent and impact of staff feedback. While most investigators reported that they solicited feedback from recruiters/staff before, during, and after the study, staff were less likely to report that their feedback was requested at each of these points. Investigators were also more likely to report that research staff input was frequently incorporated into the study and resulted in changes to the study protocol. These findings imply that investigators value staff feedback and input to a greater extent than what staff perceive. Investigators may consider more directly communicating to staff the importance and value of their feedback and how this input affects studies. This may be accomplished through a systems-thinking approach (Arnold & Wade , 2015) in which all members of the research team connect, interact, and impact study processes. This approach may be operationalized by iteratively using prompts to guide team members in setting goals, identifying barriers/obstacles, creating timelines, and outlining specific activities to achieve goals (Hinken , n.d.) . Application of CBPR principles throughout this process (e.g., emphasizing the relevance of staff-identified challenges, building on their strengths and resources, and promoting bidirectional learning), would also allow for the removal of hierarchies and power dynamics often at play within research teams to authentically invite staff perspectives and input (Israel et al. , 2005) .

Finally, previous studies have not examined perceptions about research staff training and support from both investigator and staff perspectives. In this study, most investigators reported that they provided guidance and support for their recruiters/staff to overcome recruitment difficulties and most recruiters/staff reported that they received such support.

Limitations

Although our sample size was fairly large, we might not have captured all relevant perspectives. As with all survey research, our findings may be subject to recall, non-response, and response bias. We recruited research staff through study principal investigators which might have led to selection bias in which staff were invited to complete the survey and in their responses. As this was an investigator- and staff-facing survey, we may not have captured important community perspectives. In addition, since we conducted univariate analyses to compare responses between investigators and research staff, we did not adjust for any potential confounders. While we generally examined recruitment and retention barriers and facilitators in CBPR studies, we did not collect information about the perceived success of specific recruitment strategies or how or why certain strategies were more successful. Other studies found that some effective strategies include direct interactions between research personnel and potential study participants, collaboration with community leaders, recruitment through healthcare providers and systems, snowballing, use of printed materials and broadcast media, social marketing, and personal referrals (Ibrahim & Sidani , 2014; UyBico et al. , 2007) .

Based on our findings, we developed the following best practices for the recruitment and retention of participants for health disparities research using CBPR approaches:

Investigators should solicit feedback from research staff before, during, and after study implementation to ensure that their valuable input is considered in planning and adapting research processes. Investigators should make clear to staff that their perspectives are important and share how their feedback is incorporated.

Research staff should interact with community partners in phases of research beyond recruitment (e.g., development of research questions and protocols, data analysis, and interpretation and dissemination of findings) to increase collaboration throughout the study process.

The most important factors to consider for recruitment include adequate financial incentives, flexibility in study visit timing and location, involvement of community-based organizations, and employing effective recruiters.

Study teams should carefully consider whom to employ as recruiters. Whether recruiters are from community organizations (e.g., community health workers or navigators) or are part of the academic team, qualities of a successful recruiter include: ability to engage participants, being from the same cultural/ethnic background as the study population, living in the community, being comfortable in the community, being knowledgeable about the study and the community, having strong communication skills, and being charismatic/friendly.

Study teams should check in regularly about recruitment progress and challenges, collaboratively develop strategies to address barriers, and work with community stakeholders to determine how to increase understanding and interest in research and the best way to engage populations without requiring a lot of their time.

Successful strategies to overcome recruitment barriers include combining recruitment with community events, disseminating study information through trusted sources, encouraging participants to tell others about the program, and conducting recruitment events and study visits at convenient times and locations.

Strategies to promote high retention rates should include strong relationships between participants and the study team, involvement of community-based organizations, accommodation of participants, the flexibility of research staff, collection of extensive contact information and frequent outreach to participants, adequate compensation, and promoting a positive view of the study.

In summary, health disparities research using CBPR approaches generally results in high recruitment and retention rates and positive intervention effects. The incorporation of investigator and research staff perspectives may further enhance the CBPR process and promote health equity.

Submitted : October 20, 2022 EDT

Accepted : May 03, 2023 EDT

Bridging the Gap Between Practice and Research: Forging Partnerships with Community-Based Drug and Alcohol Treatment (1998)

Chapter: 5 benefits and challenges of community-based collaboration for researchers, 5 benefits and challenges of community-based collaboration for researchers.

A subtle smile, twinkling eyes, and Southern charm helped Selbert Wood, President and Chief Executive Officer of STEP ONE, a North Carolina-based drug and alcohol abuse treatment program, illustrate, the gulf between research and practice in the field of addictions treatment and prevention. He sought advice from friends and colleagues on what he ''ought to tell a bunch of Ph.D.s and policy folks" in Washington, DC. His community confidants proposed four tongue-in-cheek recommendations for researchers:

In discussion with the panel, Mr. Wood explained that clinicians needed simple answers. A member probed, "What if the answers

This chapter was edited by Dennis McCarty with contributions by Benjamin P. Bowser and Joseph Westermeyer.

are not simple?" Mr. Wood suggested that investigators should provide practical and relevant studies. Another participant noted that many counselors read the research literature and respond to research findings but they too are looking for practical information.

Tensions between research and practice were evident in the testimony presented to the committee. Providers expressed concerns that managed care misused findings from controlled clinical trials to inappropriately justify reductions in the length and intensity of care. Policymakers hinted at discomfort with researcher-directed and -managed interventions. Both clinicians and investigators sought more value from the collaborative relationship. The folk wisdom found in the story above characterizes some of these tensions. Even readers who disagree with sentiments in the story should recognize the pragmatic, underlying attitudes. Practitioners and consumers want concrete results with clear applicability to clinical and personal needs. Investigators who seek to work closely and effectively with practitioners must be prepared to describe their research in straightforward language and must be able to explain the relevance for treatment and recovery. Similarly, because consumers and clinicians may not appreciate the need for experimental controls, researchers must be willing to teach practitioners and consumers about the importance of comparison groups. At the same time, investigators must learn to be sensitive to the treatment environment and to understand the culture of recovery. They should also respect the insights of experiential learning and be willing to explore non-experimental research opportunities.

This chapter examines the benefits and challenges to working in a clinical environment from the perspective of the research investigator. The chapter also examines approaches that have been used successfully to build research/practice partnerships, and the lessons to be learned from prior federally sponsored demonstrations that linked practice and research in the field of drug abuse treatment.

HISTORICAL APPROACHES TO COLLABORATION FOR RESEARCH

Rapid development of community-based drug abuse treatment programs requires partnerships among investigators trained in theory and methods, clinical practitioners schooled in working with clients, administrators oriented toward problem resolution, and policymakers who fund and regu-

late research, treatment, and prevention activities. Research investigators must embrace the challenge and complexity of working within clinical environments, just as clinical practitioners and consumers must be responsive to the burdens of research participation and become active partners in systematic data collection and investigation (see Chapter 4 ). Alliances between research and practice are required to develop empirically based clinical protocols and document improvements in clinical effectiveness. These alliances evolve slowly, however, as the theoretical underpinnings for research/practice linkages have evolved slowly in the study of prevention and treatment for alcohol and drug dependence. The origins include Kurt Lewin's formulation of action research, subsequent developments in applied social science and program evaluation methods, and the emergence of health services research.

Action Research

Researchers and practitioners have struggled for at least five decades to develop meaningful collaborations that simultaneously contribute to theory and knowledge development and to effective responses to social and clinical problems. Kurt Lewin was a pioneering and influential thinker on the nexus of application and theory. In the late 1940s, Lewin and his colleagues developed what they called action research to address gang-related anti-Semitism, monitor racial integration of work settings and housing projects, and explore the roots of racial and ethnic prejudices. During World War II, he applied science to management problems in a research partnership with the owners and employees at a furniture factory. This research collaboration documented the value of engaging workers in the design and collection of data, allowing them the opportunity to learn on their own and test the validity of their beliefs (Marrow, 1969). Today, many of these concepts and practices are central to the application of continuous quality improvement strategies: the importance of group participation, the value of self-management, and the use of data to test ideas and strategies.

These early studies demonstrated the feasibility of conducting research in real-world settings and the potential to generate data that both solved problems and informed theory. As early as 1944, Lewin articulated four issues that must be addressed when conducting studies in applied settings: control, influence, education, and the need for theory (Lewin, 1951). He observed that investigators have relatively little control in organizational and community settings; consequently, they must seek active cooperation and must provide some value to the group in order to gain access and to introduce systematic change. Education about scientific methods is also essential in order to reduce resistance and to help participants understand

the process. Finally, Lewin noted that effective study of social problems required both theory and application.

[Collaboration can be achieved] if the theorist does not look toward applied problems with high brow aversion or with a fear of social problems, and if the applied psychologist realizes that there is nothing as practical as a good theory.

Kurt Lewin in Theory in Social Science: Selected Theoretical Papers (1951), p. 169

Although he never studied treatment programs for alcohol and drug dependence, Lewin's observations remain clearly applicable to the integration of research and practice in substance abuse treatment programs. His exhortation on the value of research in industrial and community environments could have been written about many contemporary community-based substance abuse treatment programs:

The organizational form of the existing factories, unions, political parties, community centers, associations-in short, of most groups-is based on tradition, on ideas of "a born organizer," on the non-survival of the unfit, or at best, on primitive methods of trial and error. Of course, much practical experience has been gathered and systematized to a degree. We know from other fields, however, that the efficiency of this procedure is far below what can be achieved with systematic scientific experimentation (Lewin, 1951).

Applied Social Science

Lewin's legacy is echoed in the work of social psychologist Leonard Bickman, who articulated the distinctions between laboratory and field settings and outlined the opportunities associated with conducting research in clinical environments (Bickman, 1980). His essays assert that investigators have much to gain when they enter clinical environments. For one thing, they are challenged to make a difference: concrete solutions for current problems become a central focus, rather than the more abstract development of knowledge. Research results may have visible influence on policy and practice. Clinical settings also stimulate urgency; timeliness is critical because policymakers and practitioners demand rapid results. Large, observable, and clinically meaningful effects are more valuable than small but statistically significant changes. And demonstrated effectiveness in com-

munity treatment settings enhances adoption of clinical techniques and interventions and increases generalization of research findings.

Bickman also recognized that clinical environments are challenging settings for research. Reduced statistical control and rival hypotheses can complicate interpretation of results. Discussion of results with clinicians and clients may be a critical step in the development of a full understanding of the findings and the articulation of subtle but real influences on the observed outcomes. A cadre of clinicians and data collectors is often required to implement investigations, so teamwork is essential to success and the management of the research process and personnel can be as important as the collection and analysis of data. The investigator must also be willing and able to negotiate access and procedures with a full range of stakeholders: clients, clinicians, administrators, policymakers, and funding agencies. Chilo Madrid's ten questions ( Box 4.2 ) illustrate the importance of this negotiation.

Ownership of the data and publication of the findings are issues that often generate controversy. Investigators should recognize that the participating treatment programs have a stake in the data and have claims to the findings. Investigators who make data available to the clinicians for treatment planning and evaluation and invite participation in data interpretation and publication may be encouraged to continue investigations. Those who demand autonomy and control, on the other hand, are likely to find inhibited access to programs and patients. Finally, the complexity of the research initiatives means that investigations that involve clinical settings may require a substantial investment of time and money. Funding should include incentives for patient participants (if primary data collection is required) and for treatment agencies that permit access. These influences and tensions have been apparent in the development of health services research.

Health services research is a multidisciplinary field of inquiry, both basic and applied, that examines the use, costs, quality, accessibility, delivery, organization, financing, and outcomes of health care services to increase knowledge and understanding of the structure, processes and effects of health services for individuals and populations.

Health Services Research: Workforce and Educational Issues , IOM (1995), p. 3.

Health Services Research

The study of health care delivery systems uses social science and economic analysis to span the gulf between research, practice, and policy. Health services research can be characterized in four general categories of investigations:

clinical (studies of providers and patients and their influences on the process and outcome of care),
2.	institutional (studies that emphasize organizational and administrative aspects of service delivery),
3.	systemic (analyses of the interrelation among providers, institutions, and demands for care, including the financing and regulation of service), and
4.	environmental (assessments of the influence of social, political, and economic forces on the delivery and effects of health care).

Services research often contributes to the development and implementation of health care policies through (a) documentation (health care indicators and markers specify and describe problems), (b) causal and correlational analyses (relationships are identified and policy influences are assessed often using demonstration programs), and (c) prescriptions (strategic models outline implementation requirements and provide guidelines for policy development) (Brown, 1991).

Although the formal link between services research and policy formation can be traced most directly to the development, implementation, and analysis of Medicaid and Medicare during the 1960s, health services research evolved from descriptive and analytic investigations beginning in the first decade of the twentieth century (Ginzberg, 1991). The complexity of contemporary medical markets increases the importance of health services research and the dependence of policymakers on the data and results from these investigations. This complexity and need for data is strongly felt by community-based drug treatment organizations (CBOs) in their current environment.

Only recently has services research been applied to the study of treatment services for alcohol and drug dependence. The ADAMHA Reorganization Act of 1992 (P.L. 101-321) separated the funding of research and practice in this field. The Act placed the research institutes (National Institute of Alcohol Abuse and Alcoholism, National Institute on Drug Abuse, and National Institute of Mental Health) under the auspices of the National Institutes of Health. At the same time, the service-focused agencies (Office for Treatment Improvement and the Office of Substance Abuse Prevention) were renamed the Center for Substance Abuse Treatment and the Center

for Substance Abuse Prevention, respectively, and were located within the Substance Abuse and Mental Health Services Administration (SAMHSA) of the Department of Health and Human Services, along with the newly created Center for Mental Health Services. Concerns about the separation of research and practice led to language in the Act that required the three research institutes to allocate 15 percent of their research portfolio to health services research. The conference committee report on the legislation also requested a national plan for services research from the National Advisory Council on Alcohol Abuse and Alcoholism. The report identified eight areas where health services research was needed (Subcommittee on Health Services Research, 1997):

analyses of the organization and financing of treatment for alcohol dependence;
2.	studies on the influence of managed care;
3.	investigations on access to care and utilization of services;
4.	assessments of treatment outcomes, effectiveness and the cost-effectiveness of care;
	studies of prevention services;
6.	development of improved research methods and databases;
7.	strategies for the dissemination of research results; and
8.	workforce analyses, reviews of training needs, and assessments of the peer review process.

NIAAA's recommendations for health services research should facilitate continued development of research and practice collaborations. Another recent IOM report similarly stresses the importance of collaborative research linkages with managed care and community-based organizations to promote quality improvement in behavioral health care (IOM, 1997b). A similar set of priorities from NIDA would be helpful. Because services research is still emerging on treatment and prevention for alcohol and drug abuse and dependence, influences on policy and practice have been limited and there is much to be learned.

MODELS FOR COLLABORATION

Collaboration between research and practice takes many forms in the substance abuse treatment field and a number of collaboration models that impressed the committee are presented below. Arthur J. Schut, President of the Iowa Substance Abuse Program Director's Association, introduced the committee to the Iowa Consortium that brings together treatment providers, policymakers, and researchers based in each of the state's major universities to collaborate on research initiatives. The consortium facilitates the

development, implementation, and interpretation of investigations that examine the need for substance abuse treatment and the effects of major policy initiatives in the state.

Carol Leonard from the Navajo Nation and Philip May, Director of the University of New Mexico's Center on Alcoholism, Substance Abuse and Addictions (CASAA) offered another collaboration strategy. Their partnership illustrates a culturally sensitive approach to the combination of research and community oriented prevention and treatment. Importantly, the collaboration allows academic researchers to study a population (Native Americans) and service system (traditional practices) that would otherwise be difficult to investigate; the Navajo Nation gains through increased support from federal funding authorities and enhanced credibility of the findings from demonstration programs.

The basis for partnerships between research and practice may be strengthened when treatment agencies employ investigators to develop assessment and monitoring protocols. Chestnut Health Systems in Illinois provides an example with its in-house research staff that collaborates with clinical and management staff to develop client information and outcomes monitoring systems. The researchers use the information not only to evaluate specific interventions but also to help practitioners improve the quality of care.

The Community Clinical Oncology Program (CCOP), which has effectively linked cancer research and treatment for almost fifteen years, provides another model of collaboration. As described by Arnold Kaluzny from the University of North Carolina School of Public Health, this network, funded by the National Cancer Institute (NCI) brings together treatment providers and researchers in more than 30 states to get faster answers to research questions and bring state-of-the-art treatment to communities.

Iowa Consortium for Substance Abuse Research and Evaluation

The Iowa Consortium for Substance Abuse Research and Evaluation (the Consortium) provides a structure for communication and cooperation among policymakers, practitioners, and researchers. Representatives from the Iowa Substance Abuse Program Directors Association and investigators from four Iowa universities (University of Iowa, University of Northern Iowa, Iowa State University, and Drake University) joined with policymakers from the state agencies responsible for corrections, education, Medicaid, public safety, and public health to develop a forum to promote the collection of data and the use of research in policy formation and clinical practice. Convened in 1991 by the Governor's Alliance on Substance Abuse, the Consortium has become a vehicle for practical investigations, collaborative design and implementation of studies, multidisciplinary cooperation,

and the application of research findings to practice and policy. Current membership includes the directors of community- and hospital-based treatment agencies; researchers trained in education, psychiatry, psychology, social work, and sociology; and women and men responsible for substance abuse treatment and prevention activities in state agencies. The Consortium uses newsletters, reports, meetings, and seminars to communicate and achieve three goals:

encourage collaboration in research and evaluation studies,
2.	improve prevention and treatment services and contribute to public policy making, and
3.	educate students and professionals in substance abuse.

Grants and contracts are the primary source of funding for Consortium activities. A small appropriation from the State of Iowa supports infrastructure and coordination. The Iowa Department of Public Health collaborates with Consortium members to apply for federal awards and state contracts. Funding from the Center for Substance Abuse Treatment and the Center for Substance Abuse Prevention supports needs assessment projects. Funding from NIDA supported investigations of case management strategies. Finally, Consortium affiliated investigators evaluated Iowa's implementation of a managed care approach for publicly funded substance abuse treatment services.

Investigators who work through the Consortium structure may request letters of support from treatment providers and the state substance abuse authority when they apply for services research funds from federal, state, and local governments. The support letters strengthen applications and demonstrate a history of collaboration. The forum empowers treatment programs to participate in the design of investigations and to request support for necessary staff functions related to the research. Programs may also use the Consortium to discourage less clinically useful studies and to promote investigations that meet clinical priorities.

The Consortium's goal of fostering discussion and cooperation among treatment providers, investigators, and policymakers has been difficult to articulate and implement. Individuals trained to conduct scientific research are not initially responsive to policymaker needs to review and comment on reports prior to public release. Practitioners do not always appreciate investigator requests for changes in clinical processes, and they can make demands for information and communication that investigators find intrusive. Policymakers are frustrated by the time required for investigators to collect and analyze data. Control and autonomy remain persistent concerns. Practitioners struggle with the added burdens of data collection and seek clarification around control and ownership of data.

For some participants, the Consortium may be merely a vehicle to access data or clinical populations rather than a venue for collaboration. Nonetheless, the Iowa Consortium for Substance Abuse Research and Evaluation illustrates one way in which investigators, policymakers, and treatment providers can partner in the design and implementation of research. It provides an important example of an alliance between research, policy, and practice, and it suggests mechanisms that can be extended and applied to foster more local partnerships.

Navajo Nation

Community-based research now being undertaken by the Navajo Nation was initiated almost two decades ago by officials of the Navajo Nation (beginning with Mr. Gorman, a former tribal official) and a social science researcher, Philip May. After many years of patience and persistence, the research was finally undertaken with federal moneys, conducted under the aegis of the Navajo Nation with the collaboration of Dr. May and other researchers from the University of New Mexico's Center for Alcohol, Substance Abuse, and Addictions (CASAA), where Dr. May is now the director. CASAA worked with treatment providers in the Navajo Nation to evaluate an alcohol treatment program addressing the underlying cultural conflicts that contribute to high alcoholism rates among the Navajo. The approach was consistent with the high value the Navajo place on achieving balance and harmony with nature, family, and spirits. The collaboration provided the Navajo Nation with increased support from federal funding authorities and enhanced credibility for findings from demonstration programs.

Obstacles to establishing this community-based research program included the following:

Five factors contributed to the eventual success of this community-based research:

Academicians, Navajo leaders, and Navajo collaborators in the research project had to cooperate in a variety of complex tasks to establish a state-of-the-art-and-science project. For example, materials had to be translated into Navajo using a standard, yet time-consuming and costly method of initial translation, back-translation, pilot study, renorming and restandardizing, and final acceptance (Brislin, 1986).

Negotiations regarding data access were also important. Data that might result from such a study has the potential for embarrassing tribal officials, leaders, or members at large, while reputable researchers engage in such projects to foster the expansion of knowledge and understanding. Funding organizations wanted assurances that the findings would benefit the people for whom the project was intended, and not languish unused because they were unpalatable to one of the parties involved. After these issues were worked out to each party's satisfaction, projects were undertaken.

Drug Outcome Monitoring System

Two large community-based drug abuse treatment providers in Illinois designed and implemented a performance measurement system to monitor client outcomes and enhance their accountability with purchasers and consumers. Chestnut Health Systems and Interventions, operating 49 facilities, collaborated on a field trial of the Drug Outcome Monitoring System (DOMS). Clinical records, administrative information, and service utilization data are integrated and used for quality improvement and outcome monitoring initiatives. The system includes an assessment tool (Global Appraisal of Individual Needs—GAIN) that facilitates a diagnosis based on

DSM-IV criteria, patient placement using the American Society of Addiction Medicine criteria for level of care, treatment planning consistent with Joint Commission for the Accreditation of Health Care Organizations standards, and compliance with federal and state data reporting requirements (Dennis et al., 1997). This monitoring during and after treatment is expected to enhance clinical processes and improve outcomes. Although still in development and testing, the emphasis on clinical needs and client outcomes increases the potential value for consumers, counselors, management, and payers.

Developed with funding from NIAAA and CSAT, the Drug Outcome Monitoring System illustrates an important strategy for integrating services and research and meeting the needs for both sets of stakeholders. Because the data are of clinical value, counselors are likely to be more careful completing interviews and responding to data elements, thus enhancing data quality for research studies and policy analyses. Client subgroups are developed and benchmarks are established for levels of services and outcomes and postdischarge client tracking. The monitoring system engages clinicians and consumers in the process of tracking and recording clinical status and incorporates early reintervention protocols when postdischarge follow-up suggests that a client is in early relapse. The design of this system to be responsive to consumer and counselor needs contrasts with the top-down development of many administrative data systems that stress payer requirements and management needs.

Community Clinical Oncology Program

Initiated by the National Cancer Institute (NCI) in 1983, the goal of the Community Clinical Oncology Program (CCOP) has been to bring state-of-the-art cancer treatment, prevention, and control research to local communities. This is accomplished by involving community oncologists and community-based primary care physicians in NCI-approved clinical trials (Kaluzny et al., 1996).

CCOP is a strategic alliance among existing organizations. The three main organizations are: (1) NCI, which provides overall direction, funding, and program management; (2) NCI-designated cancer centers and clinical cooperative groups, which develop protocols, analyze data, and provide quality assurance; and (3) the community oncology programs composed of community oncologists, primary care physicians, and their clinical staff who are involved with the accrual of patients to approved treatment, prevention, and control protocols.

As of 1997, there were 51 CCOPs located in 30 states, with 300 participating hospitals where some 2000 physicians cooperate to enter patients and individuals at risk for cancer on NCI-approved clinical trials. An addi-

tional 8 minority-based CCOPs are funded to enhance participation of minority populations in clinical trials research. This group adds 42 hospitals and 350 participating physicians to the alliance (NCI, 1997).

The CCOP experience demonstrates certain general principles regarding community-based care. As well-described by Ann Greer (1988) some years ago, ''There are no magic signatories or formats which will cause knowledge to jump off the page and into practice." In CCOP, however, the creation of an infrastructure provided an opportunity to close the gap between state-of-the-art care and community practice patterns. For example, in the care of breast cancer, patients treated by CCOP physicians were the ones most consistently receiving state-of-the-art care as defined by current protocols. Moreover, changes in referral patterns among non-CCOP physicians within the community increased the likelihood that patients would receive appropriate adjuvant therapy—an important indicator of CCOP impact on quality of care delivered in participating institutions (Kaluzny et al., 1996).

This approach has also demonstrated the necessity for protocols not only to be available but to be "user friendly," "feasible," and "relevant" in the local context. Moreover, it is necessary that data managers, nursing personnel, and other support personnel be involved in the effort and that CCOP physicians be able to link to primary care providers in the community. The role of support personnel is especially critical to the successful completion of day-to-day tasks involved in patient recruitment, protocol assignment, data collection, and follow-up (Kaluzny et al., 1993).

CCOPs are not inexpensive and present a significant managerial challenge. The infrastructure alone at each clinical site can exceed $200,000. Interactions among community providers are often uneasy, and there is a need to maintain a working relationship between the cancer center (or university), the cooperative groups, and the community physicians.

Local leadership of the CCOP is a particularly critical element. To be a clinician leader requires a commitment to a research perspective with a particular emphasis or at least an orientation to epidemiology and the social behavioral sciences. To meet the realities of a changing health care delivery system, partnerships with managed care organizations must be developed (Kaluzny, 1997). Such partnerships are in the process of development. For example, the American Association of Health Plans has recently adopted a new policy intended to encourage their member HMOs to participate in clinical trials sponsored by NIH, and there appear to be an increasing number of research partnerships between managed care organizations and cancer centers (Glass and Greenlick, 1989; Myers et al., 1997), as well as new partnerships for research developing among managed care organizations (Durham, 1998).

The critical point is to close the gap between policy, research, and

treatment and thereby assure "institutional learning" at the community level. This requires an infrastructure among a set of relevant organizations. The CCOP provides this infrastructure, permitting NCI, cancer centers, cooperative groups, and community-based physicians to achieve strategic objectives that were not possible for any single organization.

LESSONS FROM DEMONSTRATION INITIATIVES

The National Institute on Alcohol Abuse and Alcoholism (NIAAA) and the National Institute on Drug Abuse (NIDA) have long traditions of supporting demonstrations to develop and evaluate treatment and prevention interventions. The institutes used a variety of funding and management mechanisms to promote prevention programs, develop services for homeless men and women, and test strategies to reduce the risk of HIV infection among drug users. Three sets of demonstration initiatives are examined to identify lessons for research-practice collaborations in community-based drug treatment.

Prevention Demonstrations

NIAAA and NIDA prevention initiatives began in the 1970s. State Prevention Coordinators were supported to facilitate state planning, provide prevention training, manage state prevention contracts, and serve as liaisons with the federal Institutes (Williams and Vejnoska, 1981). NIAAA funded the development of prevention curriculum for children, adolescents, and college students. After the models were implemented, NIAAA used a demonstration replication program to test the generalizability of the three prevention models. Eight local communities and State Alcoholism Authorities were funded to replicate and evaluate one of the prevention programs. The replication highlighted the need for systematic documentation and illustrated the variations encountered as communities deviated from model frameworks (NIAAA, 1981). The two formal school-based curricula (Here's Looking at You and CASPAR) have evolved during more than 20 years of use and remain cornerstones of prevention activities in many school systems. The university-based model, however, faded as neither the original campus nor the replication campuses maintained the initiative for long after the termination of federal funding.

Based on these experiences, NIAAA designed subsequent prevention projects to be "conceptually tighter, more skeptical, and careful in statements of objectives and intentions, more modest in whom they mean to reach and what they mean to do with people, and more deliberate in how they plan to go about it" (NIAAA, 1981). There was more emphasis on theory, and projects were more likely to be funded in public health depart-

ments and research centers than in community-based schools and organizations. The prevention strategies evolved from an emphasis on individual change to an emphasis on policy and environmental interventions. These demonstrations illustrate both the value of building system capacity (there was a substantial need for educational curricula) and the challenges of collaborating with community groups to test applications. The replications enhanced curriculum development but appear to have contributed little to science.

Projects for Homeless Individuals

The 1987 Stewart B. Mckinney Homeless Assistance Act (P. L. 100-77) authorized initiatives to address the national problem of widespread homelessness. NIAAA and NIDA collaborated to support demonstration projects that implemented and evaluated interventions for homeless men and women with alcohol- and drug-related problems. Initially, nine projects were funded in eight cities. Each project was required to allocate at least 25 percent of the award for process and outcome evaluation. A separate contract was awarded for cross-site evaluation, coordination, assistance, and data analysis (Lubran, 1990; Orwin et al., 1993). A diversity of interventions was encouraged because there was little empirical data on effective services for alcohol and drug involved homeless individuals (Huebner and Crosse, 1991). The applicants tended to be community organizations or state or local health departments. The community organizations subcontracted with academic-based investigators for the evaluation research. Each site was unique. A special issue of the Alcoholism Treatment Quarterly (McCarty, 1990) and reports from NIAAA (Murray, 1993; Shane et al., 1993) provide more details.

The evaluation report on the first round of demonstrations drew lessons, noted key findings, and made recommendations (Orwin et al., 1993). An obvious but often overlooked finding was that when working with homeless men and women, issues related to food, shelter, and security must be addressed before treatment can be initiated. Programs also learned that both program structure and flexible responses were necessary to engage and retain homeless participants. Start-up required substantial resources and persistence, especially when there was resistance to siting services in specific locations. Overall improvements in client functioning were modest. Generally, the services led to reductions in alcohol and drug use. Composite scores from the Addiction Severity Index suggested improvements in employment and economic security in some of the study sites. Housing stability was increased in a project that facilitated access to alcohol- and drug-free housing; psychiatric status improved in a different city.

Substantial project variation made cross-site comparisons difficult, and

only five of the nine sites provided useful outcome data (Huebner and Crosse, 1991; Orwin et al., 1993). The quality of the data submitted for cross-site analysis varied because the study sites tended to be community-based organizations with little research experience. Low follow-up rates compromised the integrity of the evaluation designs and threatened the validity of the findings. Finally, variability among the nine study sites and the relatively small number of study sites limited the ability to identify robust interventions and to generalize study findings.

Based on these lessons and limitations, the cross-site evaluation has general implications for collaboration between community-based organizations and researchers (Huebner and Crosse, 1991; Orwin et al., 1993). The ability of seven of the nine sites to collect and submit standardized data suggested that research is feasible in community settings even when the population is difficult to serve. The evaluators also recommended longer funding periods, larger sample sizes, more rigorous evaluation designs, standardization of research tools and interventions, and more emphasis on follow-up data collection. First, research demonstrations require at least five years of funding for implementation, maturation, and the development of a sufficient sample. Second, programs should receive technical assistance as needed on evaluation design, data collection, and analysis. Finally, adequate follow-up rates are essential to provide scientifically valid data on the effects of the interventions.

NIAAA applied these lessons to the design of a second round of community demonstration programs. Significantly, the funding mechanism was changed from grants to cooperative agreements to give NIAAA staff and its subcontractors more control and influence over development and implementation (Huebner et al., 1993). NIAAA provided guidelines for service interventions and site-level evaluations and mandated a core set of instruments. NIAAA also attempted to increase the consistency of the data collection and improve the potential for meaningful cross-site analyses. As a result of these modifications, the second round projects were primarily awarded to universities and research centers which subcontracted with community organizations for services. Details on the study sites are provided in a special issue of the Alcoholism Treatment Quarterly (Conrad et al., 1993) and an issue of New Directions for Program Evaluation (Conrad, 1994).

The evolution of the Community Demonstration Project between the first set of grants to community organizations and the second set of cooperative agreements with academic research centers illustrates the challenges of building effective collaborations among practitioners, researchers, and policymakers. The funding agency and the external (cross-site) evaluators were disappointed with the level of control and influence in the initial investigations. In the subsequent awards, research expertise was empha-

sized and specific research instruments were required. This was designed to improve the quality of the science, but changing the rules also changed the roles of the participants: service providers tended to be less directly involved, and investigators had a more dominant influence.

National AIDS Demonstration Research Project

The spread of HIV infection led Congress to ask NIDA to develop interventions that encouraged injection drug users to reduce HIV risk behaviors and enter treatment. During 1987 and 1988, the National AIDS Demonstration Research (NADR) Program funded demonstration outreach and intervention services in 47 cities (NIDA, 1996). These programs combined research and services to gather data on drug use and to test the efficacy of behavior change strategies.

Individually and collectively, the study sites demonstrated that injection drug users were responsive to education and outreach interventions (NIDA, 1996; Needle and Coyle, 1997). NIDA encouraged state substance abuse prevention and treatment authorities to promote the adoption and continuation of the outreach and educational models that appeared to be most effective (NIDA, 1996). Three strategies for behavior change among injection drug users were disseminated: (1) a two-session risk reduction education intervention (Coyle, 1993); (2) a four-session psychoeducational intervention using behavioral counseling techniques (Rhodes, 1993); and (3) an outreach and community change strategy where recovering drug users provide education and support for behavior change (Wiebel, 1993).

NIDA also used a cooperative agreement mechanism to support multisite studies to monitor HIV risk behaviors and test outreach interventions among out-of-treatment drug users. Collaboration among the 23 study sites permitted more rapid data collection on infrequent behaviors and small populations (NIDA, 1996). The Cooperative Agreement for AIDS Community-Based Outreach/Intervention Research Program appears to have been an effective approach to multisite research collaborations with community-based services.

These programs demonstrated that out-of-treatment drug users could be found and educated, and they also illustrated the value of collaborations between research and services. Involvement of multiple sites and varied teams of investigators increased the generalizability of the findings, and policymakers were able to be more confident in their programming recommendations. There appears to have been substantial teamwork among the outreach workers, counselors, and investigators. The initiatives document the feasibility of developing structures that support partnerships among consumers, clinicians, and researchers.

GUIDANCE FOR GRANT REVIEW

To participate in research, evaluation, and demonstration opportunities, treatment programs and investigators usually must respond to program announcements and requests for applications from the NIH research institutes and the SAMHSA service centers. The committee heard much apprehension about the application and review process—the competition is great, the review process is biased against clinically useful investigations, community-based agencies are not strong applicants, and controlled clinical trials are more likely to be funded than services research. Similar concerns were voiced in another IOM Committee report, Dispelling the Myths About Addiction: Strategies to Increase Understanding and Strengthen Research, (IOM, 1997a). The relatively small proportion of applications that are approved and funded attests to the difficulty of the process. But the widespread misgivings also suggest basic misunderstandings about the review process. More education and guidance about the application and review process may be useful, especially if it is pragmatic.

An experienced perspective on the review process is provided by the former chair of a NIDA initial review group, who identifies ten common mistakes in grant writing (Oetting, 1990). Applicants should recognize their weaknesses and build a team that strengthens the proposal. Sufficient detail is required to convince reviewers that the study can be completed. If the proposal has been previously reviewed, the resubmission should respond to the prior critiques. The aims of the study must be important and address real needs and issues. Methods must be used appropriately and applicants should not make excuses for inadequate procedures.

Three of Oetting's list of ten mistakes seem directly applicable to the challenge of research and practice collaborations. First, applications that seek research funds primarily to enhance treatment capacity are usually a mistake. While services can be funded through research applications (if the service is necessary to test specific hypotheses), reviewers evaluate the quality of the research plan and the potential for knowledge generation not the need for more treatment. In research applications, the quality of the research is the major determinant of the application score. Another common grant writing mistake is to attach analyses of drug use and abuse to programs and investigations with a different primary interest. Although drug abuse affects many facets of life, applications that fail to address drug use and abuse directly tend to be weak. Applicants must demonstrate a comprehensive understanding of the connections to drug abuse and not merely seek additional funding. Finally, Oetting (1990) suggests that the most critical mistake is not to apply. The process is difficult and the probability of funding is low. Agencies that never apply, however, can never be funded and can not benefit from the literature review and thinking required to

develop an application and from the opportunity to receive reviewer feedback, revise and submit revised applications which have a higher probability of funding.

Because community-based organizations receive few research grants, it appears to some observers that nonacademic applicants are disadvantaged in the application and review process. Significant changes may be required in the application and review process in order to increase awards to community-based applicants. If, however, the goal is research that is of high quality and applicable to treatment programs, the application and review process should stress the importance and quality of the proposed research. Applications with strong partnerships between practitioners and investigators should be encouraged and should be competitive in the current review process. Ultimately, the committee determined it was not appropriate to recommend changes in the general process for applying for and reviewing research applications. The committee felt strongly, however, that mechanisms must be created to stimulate and support effective alliances between research teams and treatment providers, and recommended a special grant program with a unique review process to achieve this end.

The review of applied research and health services research suggests that research in clinical settings is not easy and has many unique aspects, views that were supported by many who spoke to the committee. Environmental control is reduced. Research teams are required. Access and funding issues must be negotiated. Data and results must be shared. Special skills and training are necessary for research collaboration in a community-based setting, but there are few, if any, programs that provide such training. Professional development programs are needed, similar to the NIH training programs and Robert Wood Johnson clinical scholars program. Services research in community-based substance abuse treatment settings requires investigators who can build meaningful partnerships with drug abuse treatment programs and who have the skills to design and implement high quality research studies that will contribute to the evolution and refinement of community-based treatment interventions.

There is no single best approach to promoting collaborations. Strategies will vary depending on participant personalities, the issues and policies of interest, and the resources available. The Iowa Consortium works, in part, because policymakers help support the research infrastructure and provide a forum for communication. Chestnut Health Systems Drug Outcomes Monitoring System illustrates the advantages of working closely with investigators based in the treatment agency. CCOP also provides research infrastructure support and has the added benefit of having been

developed and tested by NCI. The promise of enhanced consumer access to treatment innovations suggests an intriguing potential for application of the CCOP model within community-based drug abuse treatment services. Finally, the collaboration between CASAA and the Navajo Nation shows the importance of long-term relationships. This partnership promotes systematic study of populations and procedures that are often not open to research investigation.

The culture of treatment and recovery requires investigators who are sensitive to its nuances. Demonstration programs funded through NIDA and NIAAA document that research collaborations with treatment programs, consumers, and investigators are feasible. The funding requirements appear to influence the nature of the collaborations: the homeless demonstrations and the HIV demonstrations were more service oriented when funding went to community-based providers who subcontracted for research and evaluation services, however, there was more emphasis on science when academic research centers controlled the funding and subcontracted for services. Both research and service must have adequate and specific funds. Adequate funding for both will empower services researchers and treatment providers alike. Practitioners and researchers must have a mutual understanding and appreciation for the other's role. Ultimately, research and practice alliances must balance scientific control and rigor with the realities of clinical environments.

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Today, most substance abuse treatment is administered by community-based organizations. If providers could readily incorporate the most recent advances in understanding the mechanisms of addiction and treatment, the treatment would be much more effective and efficient. The gap between research findings and everyday treatment practice represents an enormous missed opportunity at this exciting time in this field.

Informed by real-life experiences in addiction treatment including workshops and site visits, Bridging the Gap Between Practice and Research examines why research remains remote from treatment and makes specific recommendations to community providers, federal and state agencies, and other decision-makers. The book outlines concrete strategies for building and disseminating knowledge about addiction; for linking research, policy development, and everyday treatment implementation; and for helping drug treatment consumers become more informed advocates.

In candid language, the committee discusses the policy barriers and the human attitudes—the stigma, suspicion, and skepticism—that often hinder progress in addiction treatment. The book identifies the obstacles to effective collaboration among the research, treatment, and policy sectors; evaluates models to address these barriers; and looks in detail at the issue from the perspective of the community-based provider and the researcher.

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AHRQ Evidence Report Summaries. Rockville (MD): Agency for Healthcare Research and Quality (US); 1998-2005.

This publication is provided for historical reference only and the information may be out of date.

AHRQ Evidence Report Summaries.

99 community‐based participatory research: assessing the evidence: summary.

M Viswanathan , A Ammerman , E Eng , G Garlehner , KN Lohr , D Griffith , S Rhodes , C Samuel-Hodge , S Maty , L Lux , L Webb , SF Sutton , T Swinson , A Jackman , and L Whitener .

Current as of August 2004 .

Introduction

Community‐based participatory research (CBPR) is an approach to health and environmental research meant to increase the value of studies for both researchers and the community being studied. This approach is particularly attractive for academics and public health professionals struggling to address the persistent problems of health care disparities in a variety of populations (identified by factors such as social or economic status, lack of health insurance, or membership in various racial and ethnic groups). 1 ‐ 6

Few guidelines exist for evaluating CBPR grant proposals and determining what resources are required to promote successful community‐based research efforts. Still less is known about the degree to which CBPR has been effective in sustaining long‐term university‐community partnerships and generating high‐quality data to guide further research. Experts are becoming impatient with the gap between knowledge produced through conventional research and the translation of this research into interventions and policies to improve the health of various groups, especially minority communities and other disadvantaged populations. 2, 7 ‐ 12

Done properly, CBPR benefits community participants, health care practitioners, and researchers alike. CBPR creates bridges between scientists and communities, through the use of shared knowledge and valuable experiences. 13 ‐ 17 This collaboration further lends itself to the development of culturally appropriate measurement instruments, thus making projects more effective and efficient. 18, 19 Finally, CBPR establishes a mutual trust that enhances both the quantity and the quality of data collected. 13, 20 ‐ 22 The ultimate benefit to emerge from such collaborations is a deeper understanding of a community's unique circumstances, and a more accurate framework for testing and adapting best practices to the community's needs. 2, 13, 15, 18, 23 ‐ 29

In 2001, the Agency for Healthcare Research and Quality (AHRQ), in collaboration with several Federal agencies and the W.K. Kellogg Foundation, convened a 2‐day conference "to promote and support the use of CBPR, to develop strategies to advance CBPR, and to explore the use of CBPR as a resource for policymakers to help guide their program development." 30 AHRQ organized the meeting specifically to address 3 key barriers to CBPR:

Insufficient community incentives (staffing and resources) to play a partnership role in CBPR projects.
Insufficient academic incentives (staffing and resources) for researchers to play a partnership role in CBPR projects.
Inadequate funding and insensitive funding mechanisms. *

The conference membership recommended an AHRQ‐commissioned study of the existing evidence on the conduct and evaluation of CBPR, performed by one of the Agency's Evidence‐based Practice Centers (EPCs). Accordingly, the Agency commissioned the RTI‐University of North Carolina (RTI‐UNC) EPC to produce a systematic review and synthesis of the scientific literature regarding CBPR and its role in improving community health.

Specifically, the EPC investigators were asked to consider 4 Key Questions (KQs):

KQ 1: What defines community‐based participatory research?
KQ 2: How has CBPR been implemented to date, with regard to the quality of research methodology and community involvement?
KQ 3: What is the evidence that CBPR efforts have resulted in the intended outcomes?
KQ 4: What criteria and processes should be used for review of CBPR in grant proposals?

In 2002, the EPC convened a group of experts to provide early guidance for the investigation. The meeting participants included community research partners, academic researchers, and CBPR research financiers, bringing a diverse range of perspectives to the review. Feedback from the expert meeting substantially altered the researchers' search terms and their research questions.

Search Criteria

Articles considered for the EPC review included peer‐reviewed reports of human studies, across all ages and both genders, conducted in English‐speaking North America (U.S. and Canada), and published in the English language. The source language was limited to exclude from consideration international studies conducted in vastly different sociocultural and political climates. However, international publications that described the history and definition of CBPR were included. Editorials, letters, and commentaries were excluded from the analysis, as were articles in which information related to the key questions was not reported. The EPC staff limited its review to studies that included at least one community as a research collaborator and, therefore, excluded studies that involved only health agencies or other professional institutions in the research process.

Relevant Data Sources

For KQs 1 through 3, the EPC first searched standard electronic databases—e.g., MEDLINE®, Cochrane Collaboration resources, PsycINFO, and Sociofile—using search terms based on the inclusion/exclusion criteria and additional key terms identified in the expert group meeting. The EPC researchers then consulted their Technical Expert Advisory Group (TEAG), regarding in‐progress studies that had not been published. Key among the sources of information identified was a special CBPR issue of the Journal of General Internal Medicine (July 2003). The third level of the investigative process required EPC reviewers to perform hand searches of the reference lists of relevant articles, for the purpose of identifying additional articles to gain full information on particular studies. Unlike many research areas, searching the CBPR literature is labor‐ rather than computer‐intensive.

For KQ 4, very few peer‐reviewed articles directly addressed CBPR funding issues per se . 31 Rather, the culled materials had a tendency to describe agency or foundation funding mechanisms used to support CBPR. 32, 33 Accordingly, the EPC researchers reviewed the Web sites of several organizations funding CBPR research and spoke with funding agency representatives involved in the development of CBPR‐related grants programs or their agencies' grant review process.

Data Collection and Analysis

Data was collected for KQs 1, 2, and 3 through the abstraction of relevant information from eligible articles and the creation of summary evidence tables presenting the key details and findings for the articles. The EPC paired trained abstractors with a senior reviewer, who used an analytic framework to guide development of abstraction tables. The EPC researchers used the same framework to rate the quality of both the primary research and primary community‐based participation elements. They rated the quality of only those studies (often represented by a set of published articles) representative of a completed intervention study evaluation, or an observational study designed to permit extrapolation beyond the study population.

The EPC researchers identified a total of 1,408 abstracts with relevance to the four key questions. Of these, they retained and pulled 297 articles for complete review. Another 112 articles were excluded from this subset—typically because the study could not be considered CBPR. Ultimately, the EPC investigators reviewed 55 of the 185 retained articles for KQ 1 and 123 articles comprising 60 studies for KQs 2 and 3. (Full names and publications lists for the identified studies can be found in Table 4 of the complete report.) The researchers reviewed 7 articles for KQ 4. A key limitation of using secondary and tertiary sources to identify CBPR studies is that the studies often do not identify themselves as CBPR.

KQ 1: Definition of Community‐based Participatory Research

The EPC researchers sought to answer 3 important questions in their exploration of this topic:

What are the essential elements of CBPR?
What are the "best practices" of CBPR, including the characteristics of successful investigator‐community partnerships?
What major outcomes are anticipated from both the research and community perspectives?

The EPC researchers analyzed 55 conceptual articles (i.e., synthesizing the evolution of, values for, or lessons learned from collaborative research), in the process of writing a deliberately short working definition for CBPR. These articles each used terms common to, or similar to, CBPR. They originated with a variety of fields in the social and health sciences. Using these articles, the researchers were able to arrive at a definition they feel confident will serve the purposes of AHRQ, other Federal agencies supporting CBPR, and other interested parties and agencies:

Community‐based participatory research is a collaborative research approach that is designed to ensure and establish structures for participation by communities affected by the issue being studied, representatives of organizations, and researchers in all aspects of the research process to improve health and well‐being through taking action, including social change .

To expand upon this definition, the authors further suggest that CBPR involves:

Co‐learning and reciprocal transfer of expertise, by all research partners, with particular emphasis on the issues that can be studied with CBPR methods.
Shared decisionmaking power.
Mutual ownership of the processes and products of the research enterprise.

KQs 2 and 3: Intervention Studies and Outcomes

The EPC researchers found a striking degree of variability in the study designs, substantive concerns, and the extent of community involvement in CBPR studies. Thirty of the 60 studies relevant to these KQs included interventions, while the other 30 were noninterventional studies. For the purposes of this review, researchers defined an intervention as an organized and planned effort to change individual behavior, community norms or practices, organizational structure or policies, or environmental conditions.

KQ 2: Implementation of Community‐based Participatory Research

Each of the 60 studies identified as CBPR resulted in an average of 2 publications. Thirty‐five studies produced one published article each; not counting the East Baltimore Health Promotion Study—which lasted 17 years between the first publication and the last—the 24 studies with more than one publication each produced, on average, 3.5 articles over a period of about 2.5 years. The majority (63.6 percent) of the 55 studies giving information on their funding reported a single funding source, while a significant minority (32.7 percent) mentioned 2 funding sources, and a handful (3.7 percent) report more than 2 sources.

Quality of Research Methodology

Of the 60 CBPR studies, 30 included ongoing or completed interventions; of these, 12 evaluated the intervention and 18 either had not completed the intervention, or had not evaluated it fully. The remaining 30 studies did not have an intervention or did not report one.

Four of the 12 studies that implemented and evaluated interventions 14, 34 ‐ 44 were randomized controlled trials (RCTs), and 5 were quasi‐experimental studies. The 3 remaining studies had nonexperimental designs.

Of the 30 studies classified as noninterventional because they were neither designed with an explicit intervention nor did they undertake an evaluation of any intervention that might have resulted from their findings, 10 studies moved beyond problem identification to risk factor assessments, 45 ‐ 50 examining prevalence, 5 1, 52 and examining the impact of environmental or policy change. 53, 54 Increasing community capacity or engendering empowerment as a byproduct of the collaboration, was the major objective in four of the projects. 55 ‐ 58

Community Involvement in the Research Process

Sixteen studies documented the involvement of the community in making measurement instruments more culturally relevant, or mentioned field‐testing their instruments to improve their reliability. Fourteen studies described the effort to build community partnerships through the use of baseline data, general findings, or process evaluation results. Many of the studies provided rich qualitative and quantitative data regarding the lengthy process of building partnerships between institutions and communities—although formal evaluation of this process was rare.

Regarding evidence in the published literature of the level of community involvement in the research process, 28 of 60 studies (47 percent) involved the community in helping to set priorities and generate hypotheses. The extent of community involvement, however, varied greatly among the studies. Community input was used in some studies to direct change or expand priorities while others used community involvement mainly to confirm their priorities.

Researchers many times took a lead role in proposal development, often applying for grants before the actual community involvement began. Fourteen studies mentioned community involvement in proposal development. Community involvement took place mainly in the form of advisory committees, but there were also examples of partnership steering committees in which community partners were involved as equal partners. In one turn of events, the community approached the researchers to initiate the proposal on the basis of the community's priorities and desired research.

Nineteen studies reported shared funding. Communities used funds mainly to pay for staffing. In one study, the community contributed some of the direct funding (taken from union funds) to maintain the research.

Twenty‐eight studies described the active participation of the community in the study design and implementation. Fifty studies reported community involvement with respect to recruiting and participant retention. Contact with community members generally raised participation rates. Local staff helped to administer surveys and conduct interviews, and as survey helpers fluent in the languages of the target group.

Of 30 studies with a planned or implemented intervention, more than 90 percent (28 in all) reported community participation in the intervention design and implementation. Among the 30 studies without a planned intervention, 30 percent (10 studies) reported that community members had participated in the design of future interventions for the community, based on the study results.

Articles reviewed by the EPC investigators made little mention of the involvement of community partners in the data interpretation or manuscript preparation processes. Although some papers included authors without academic degrees, the researchers could not draw firm conclusions about the level of participation by community partners.

The EPC researchers also identified those studies in which communities were involved in translating research findings into policy change. Three of the 60 studies reported demonstrable policy change in civic bodies, as a result of the intervention through the efforts of the community collaborators. Five studies brought about change in private institutions or at local levels through the efforts of community collaborators.

Thirteen studies reported on the sustainability of programs or interventions. An additional 28 studies detailed the integration or application of findings to achieve changes in health or other aspects of daily life. Some projects achieved temporary sustainability of programs through the acquisition of additional grants for further research or by attracting local funding.

KQ 3: Outcomes of Community‐based Participatory Research

Improved research quality outcomes.

The investigators rated the 12 studies with completed interventions for research quality and for adherence to the principles of community participation. On a scale of 1 to 3, higher scores reflected better quality. The research quality scores reflected study design rigor, with experimental studies rating highest overall. Community participation scores, however, appeared less closely associated with study design. And while the scores on these two performance dimensions are not directly comparable, the average research quality scores ranged from 1.5 to 2.8 with a mean of 2.3, while the community participation quality scores ranged from 1.6 to 3.0 with a mean of 2.2.

When the EPC researchers looked at the influence of community involvement on the quality of interventional studies, they discovered 11 of the 12 completed intervention studies had reported enhanced intervention quality. Just two studies reported improved outcomes, while eight noted enhanced recruitment efforts, four reported improved research methods and dissemination, and three described improved descriptive measures. Very little evidence of diminished research quality resulting from CBPR was reported.

Community and Research Capacity

Of the 60 studies reviewed, 47 reported improved community involvement, including additional grant funding and job creation, as an outcome associated with the study. The authors—typically academics—generally focused on the increased capacity of the participant community, rather than that of the research community.

Health Outcomes

Among the 12 studies evaluating completed interventions that play a role in health outcomes, two dealt with physiologic health outcomes, three with cancer screening behavior, and four addressed other behavioral changes (including alcohol consumption, immunization rates, and safer sex behavior). Finally, three studies measured the impact of the intervention on emotional support, empowerment, and employee well‐being.

Given the highly varied health outcomes, measurement strategies, and intervention approaches used, the EPC researchers were unable to perform a direct comparison of studies and their relative impact on health outcomes. Moreover, an absence of cost‐effectiveness data precluded any comparison of outcomes from CBPR studies and those of more traditional research studies.

KQ 4: Funding Criteria for Community‐based Participatory Research

AHRQ asked the EPC investigators to address several specific questions about CBPR funding, drawing on the lessons learned through the synthesis of the literature on the first 3 key questions. Specifically:

What current approaches are being used by funders in their efforts to solicit and review CBPR grant proposals?
What criteria should high quality grant applications possess?
What guidance can be offered to funding organizations and CBPR applicants?
Who should be involved in the review process? What should be the role of the community?

Current Approaches by Funders

The Centers for Disease Control and Prevention and the National Institute of Environmental Health Sciences have been at the forefront of Federal CBPR funding to date. Specific initiatives by these agencies include many of the EPC‐reviewed studies. Interest in funding CBPR at the Federal level is growing, given the recent creation of an Interagency Working Group for Community‐based Participatory Research. This group has begun assembling information on existing funding mechanisms for CBPR.

Discussions with individuals from the NIH and CDC tasked with generating requests for research proposals on specific topics (Requests for Applications [RFAs]) and administering the review process underscored the need for brief guidance materials (fact sheets) about CBPR for reviewers less familiar with this approach. Guidelines for individuals writing RFAs designed to encourage CBPR submissions and documents providing guidance for researchers submitting CBPR proposals also were recommended.

Criteria for Applications

According to the details of conversations between researchers and funders, the process of obtaining funding for CBPR projects through conventional review mechanisms can be a difficult one. This is often because reviewers are less familiar with (and perhaps even skeptical about) the possibility of integrating high‐quality conventional research within the framework of a CBPR collaboration. The EPC researchers identified relatively few high‐quality completed interventions or observational studies, relative to what appears to be many excellent collaborations based on CBPR principles.

Guidance for Funding Organizations and Applicants

The researchers created three concise documents providing guidance to funding organizations, reviewers, and applicants, based on the EPC's review, discussions with Federal funding sources, reviews of funding agency Web sites, and the funding criteria outlined above. The EPC elected to employ the same review criteria often used by agencies within the U.S. Department of Health and Human Services in the development of these prototype guideline documents; these criteria are both standardized and rigorous. These documents (CBPR Exhibits 1, 2, and 3) are available on the RTI Web site (www.rti.org).

Involvement in the Review Process

Discussions with funding providers and their review of the literature led EPC investigators to recommend the inclusion of academic experts for the content area, and for CBPR methods, on project application review panels. Moreover, they recommended involving individuals with expertise in both arenas. The researchers further suggested the potential value of including community representatives, but emphasized the need to orient and structure the review panels to immediately and effectively tap into the expertise of the community representatives.

Implementing CBPR

Research quality.

Authors of interventional studies (whether traditional or CBPR) often must publish their findings and study methodology in separate articles. The nature of CBPR further compounds this fragmentation when years of partnership development and collaboration must be distilled to few words in a small number of journals willing to publish this more descriptive science. This may be why information regarding the implementation of CBPR, both in terms of community participation and the research, often was missing in the EPC‐reviewed articles.

A limited number of studies representing a complete and fully evaluated intervention—an observational study or an epidemiologic study that can be generalized beyond the participants involved—have been published to date. Limiting factors appear to be the categorical nature of most Federal funding, funding period length and flexibility, and the page limitations of journals.

There was little evidence to indicate that high‐quality scores in community collaboration are associated with low‐quality research scores. Recent special journal issues focusing on CBPR have led a number of publications to implement high‐quality research methods. CBPR funding initiatives originating with Federal agencies have the potential to do the same.

Level of Community Involvement

Community involvement varied in different stages of the research. There was strong involvement in recruiting study participants, designing and implementing the intervention, and interpreting findings. Many authors argued that community involvement (especially in theses areas) leads to:

Greater participation rates.
Increased external validity.
Decreased loss of followup.
Increased individual and community capacity.

The disadvantages of community involvement were not frequently reported, but they may include:

The introduction of selection bias (bias in recruitment).
Decreased (and sometimes an absence of) randomization.
The potential selection of highly motivated intervention groups not representative of the broader population.

Achieving Intended Outcomes

Improving research quality.

In CBPR, researchers must work with the community to select and justify the strongest possible research methods, while balancing research rigor with their responsiveness to the community. The researchers must credit community members with the ability to understand complex research challenges, if presented clearly and thoughtfully. One of the many benefits of making research partners of community members is that they begin to see the long‐term gains associated with research, in comparison to the relatively short‐term nuisance of data collection activities.

Enhancing Community Capacity

Enhanced community capacity was rarely mentioned in the EPC's review of the literature as an explicit goal of CBPR projects. Rather, it was mentioned in descriptions of the collaborative process and was clearly considered to be a critical component. Studies were much more likely to report capacity building in the community, than in the cadre of researchers or their institutions. Perhaps a true indicator of investigator appreciation for CBPR might be published study results that include a discussion of capacity‐building efforts on the part of the researchers.

Improving Health Outcomes

Among the limited number of fully evaluated, complete interventions that were identified, the stronger or more consistently positive health outcomes generally were found in the higher quality research designs. This should convince CBPR research partnerships to pay adequate attention to the "R" component of CBPR.

Given the long‐term nature of true CBPR efforts, individual and community capacity‐building efforts ultimately may result in positive health outcomes that have little or nothing to do with those targeted in the initial study. None of the studies reviewed could accurately predict such long‐term and indirect potential benefits of CBPR.

Funding Issues

Because CBPR is a potential approach to translational research, the EPC researchers have suggested using peer review groups with a background in translational research or research dissemination to consider the merits of grant proposals for this type of research. Conversely, peer review by conventional mechanisms rather than special emphasis panels has the potential to expand the options for funding CBPR efforts, while at the same time educating other scientists on the potential rigor and "added value" of CBPR. A proposal based on CBPR should not simply describe CBPR criteria—it should also discuss the potential benefits for the research quality and for the community.

Future Research

In many areas of health promotion and disease prevention, researchers and community advocates alike are beginning to focus their efforts further "upstream" in the socio‐ecologic model, encouraging a greater emphasis on policy and environmental changes that facilitate proactive health choices at the individual level. CBPR is well positioned to address such approaches to health promotion through its ability to mobilize community action. Continued efforts aimed at achieving the best possible balance between research methodologies and community collaboration are critical to advancing the field.

The EPC investigators anticipate a significant increase in high‐quality CBPR coverage in the near future, due in part to a number of recent Federal initiatives funding CBPR projects and a willingness on the part of respected journals to publish the findings. Along with proposed CBPR proposal‐writing and peer‐review guidelines, the investigators also have suggested that recommendations may be needed to improve the quality of CBPR study reports. These guidelines would reflect the increasing rigor required of authors in the evidence‐based practice field, while at the same time acknowledging the unique situation facing those researchers who are balancing research rigor with a commitment to community collaboration.

Availability of Full Report

The full evidence report used to create this summary was prepared for AHRQ by the RTI‐University of North Carolina Evidence‐based Practice Center under Contract No. 290‐02‐0016. Printed copies may be obtained free of charge from the AHRQ Publications Clearinghouse by calling (800)‐358‐9295. Inquiries should include a request for Evidence Report/Technology Assessment No. 99, Community‐based Participatory Research: Assessing the Evidence .

The Evidence Report can also be downloaded as a set of PDF files .

AHRQ Publication Number 04‐E022‐1

Current as of August 2004

Internet Citation:

Viswanathan M, Ammerman A, Eng E, et al. Community‐Based Participatory Research: Assessing the Evidence . Summary, Evidence Report/Technology Assessment: Number 99. AHRQ Publication Number 04‐E022‐1, August 2004. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/clinic/epcsums/cbprsum.htm

Drawing on this conference, AHRQ prepared a guide to community‐based participatory research for community groups and the general public, The Role of Community‐Based Participatory Research: Creating Partnerships, Improving Health (AHRQ Publication No. 03‐0037, June 2003).

AHRQ Publication Number 04-E022-1

Cite this Page Viswanathan M, Ammerman A, Eng E, et al. Community‐Based Participatory Research: Assessing the Evidence: Summary. 2004 Aug. In: AHRQ Evidence Report Summaries. Rockville (MD): Agency for Healthcare Research and Quality (US); 1998-2005. 99.

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Strengthening the effectiveness of community health system: Assessing the factors that enhance or constrain the delivery of health services within communities in Nigeria

Open access
Published: 05 September 2024
Volume 22 , article number 124 , ( 2024 )

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Okechukwu Ozor 1 ,
Enyi Etiaba 1 &
Obinna Onwujekwe 1

Introduction

Sub-optimal community health service delivery (CHSD) has been a challenge constraining community health systems (CHS) globally, especially in developing countries such as Nigeria. This paper examined the key factors that either enhance or constrain CHSD in Nigeria at the individual, community/facility and governmental levels while recommending evidence-based solutions for sustaining and improving CHSD within the framework of CHS.

Data were collected through a qualitative study undertaken in three states (Anambra, Akwa-Ibom and Kano) in Nigeria. Respondents were formal/informal health providers, community leaders and representatives of civil society organizations all purposively sampled. There were 90 in-depth interviews and 12 focus group discussions, which were audio-recorded, transcribed verbatim and analysed thematically using codes to identify key themes.

Factors constraining community health service delivery at the individual level were poor health-seeking behaviour, preference for quacks and male dominance of service delivery; at the community/facility level were superstitious/cultural beliefs and poor attitude of facility workers; at the governmental level were inadequate financial support, embezzlement of funds and inadequate social amenities. Conversely, the enabling factors at the individual level were community members’ participation and the compassionate attitude of informal providers. At the community and facility levels, the factors that enhanced service delivery were synergy between formal and informal providers and support from community-based organizations and structures. At the governmental level, the enhancing factors were the government’s support of community-based formal/informal providers and a clear line of communication.

Conclusions

Community health service delivery through a functional community-health system can improve overall health systems strengthening and lead to improved community health. Policy-makers should integrate community health service delivery in all program implementation and ultimately work with the community health system as a veritable platform for effective community health service delivery.

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Poor community healthcare service delivery (CHSD) has adverse effects on both the individual and the economy of the state [ 1 , 2 ], while improved community healthcare service delivery has been shown to relate to more productivity in people [ 3 ]. Therefore, ensuring an efficient community health service delivery has implications for not only improving the health of the citizens but also the economy of the country. Achieving universal health coverage (UHC) and the Sustainable Development Goals (SDGs), for any country relies on the effectiveness of the country’s health service delivery to its communities; this effectiveness is dependent on how well factors that constrain and enhance health service delivery are identified, addressed and sustained [ 4 , 5 ]. The promotion of effective community health service delivery that would enhance the community health system in Nigeria has been a key policy objective of the Nigerian government, as contained in the Nigerian 2016 National Health Policy document [ 6 ]. This is because ensuring an efficient community health system has been a major global issue for countries across the globe [ 7 , 8 ]. According to the Nigerian 2016 National Health Policy document, the improvement of health service delivery at the community level has been identified as one of the key strategies for improving community health systems (CHS). Although there is no consensus for defining the concept of community health system because it is still evolving, Schneider and Lehmann in 2016 defined it as the set of local actors, relationships and processes engaged in producing, advocating for and supporting health in communities and households outside of, but existing in relationship to, formal health structures [ 9 ]. Secondly, Nigeria has not yet formally defined a community health system outside of the primary healthcare (PHC) system but, on occasions, has used these terms interchangeably [ 30 ]. However, some authors have also framed the CHS as the space between the “local health system” and the community, filled by the community health workers, who form a critical component of the CHS, acting as service extenders, cultural brokers and social change agents, extending health services to households [ 36 , 37 , 38 , 39 ]. It has also been conceptualized as the “grey zone” between the public health system, non-governmental organizations (NGO) and the private health system [ 40 , 41 ].

In this study, the authors a conceptualize community health system to refer to the actors (and their actions and relationships) in the formal and informal sectors found within the Nigerian local communities that influence healthcare service provision, utilization and advocacy. This includes, but is not limited to, actors such as the ward development committee (WDC), community security personnel, bonesetters, herbalists, traditional birth attendants (TBA), patent medicine vendors (PMVs) and formal actors such as the PHC centres and other facilities that provide formal healthcare services in the communities, such as the health posts. The concept within the Nigerian context also captures the intricate relationships and processes that may exist between these actors that influence the quality of healthcare service provision for the communities they serve.

Nigeria established the PHC system in 1976, which designated the local government areas (LGAs), the second smallest administrative level in the country, the responsibility of managing and implementing health services at the community level [ 30 ]. Subsequently, the National Primary Health Care Development Agency (NPHCDA) was established in 1992 to ensure the sustainability of previous gains and better manage the PHC system in the country [ 33 ], with the agency revising the PHC system in 1993 [ 10 ]. Despite these efforts, it is regrettable to see Nigeria rank 157th out of 167 countries in a 2023 world health and health system ranking [ 11 ]. The CHS operates just below the PHC system but is intrinsically linked to it, and its optimal functionality is expected to help in improving the country’s ranking amongst global health systems.

Studies have shown that the CHS in Nigeria has been deteriorating and needs to be enhanced as a way of improving the overall health system as well as boosting the country’s health profile [ 12 , 13 ]. This deterioration was attributed to a lack of adequate community health workers (CHWs) and a lack of re-training for the few available [ 13 ], poor female representation, poor collaboration with pre-existing community structures and hence poor community participation [ 12 ]. However, to improve community health system delivery in Nigeria within the construct of the CHS, it is important to assess the factors that constrain as well as promote healthcare service delivery at different levels across communities to mitigate the constraining factors while ensuring the sustenance of the promoting factors. Identifying and addressing the key factors that impede community health service delivery in Nigeria have strong implications for the improvement of CHS in the country as well as the attainment of the UHC and SDGs. This paper examined the key factors that either enhance or constrain CHSD in Nigeria at the individual, community/facility and governmental levels while recommending evidence-based solutions for sustaining and improving CHSD within the concept of CHS. It is a portion of a larger study on improving health at the community level in Nigeria, towards UHC. The findings will be useful for decision-makers in relation to possible solutions to tap into the latent resources of communities, especially within the context of CHS to significantly improve community health.

Study area and design

This study was conducted in three states across three geopolitical zones in Nigeria, namely Akwa-Ibom (south-southern zone), Anambra (south-eastern zone) and Kano (located in the north-western region). The areas were purposively chosen to achieve a geographical representation of the country and ensure more spread of the result findings. Data were collected through face-to-face semi-structured interviews and focus group discussion (FGD) with open-ended questions and prompts from key informants. Purposive sampling was used to select two local governments areas (LGAs) in each of the three states. The sampled LGAs included one rural and one urban area. For Akwa-Ibom State, the urban LGA was Uyo, while the rural LGA was Itu. For Anambra State, the urban LGA was Awka South LGA, while the rural LGA was Aguata. For Kano State, the urban LGA was Nasarawa Local Government Area, while the rural LGA was Kumbotso. The purposive sampling technique was used to select respondents for the study. The factors considered in their identification and selection were their level of participation and involvement in health-related activities in the communities, their occupation, leadership roles and length of service to the community or the government. The respondents cut across different groups – policy-makers; civil society organizations (CSOs); non-governmental organizations (NGOs); traditional, religious and community leaders; community groups; formal health providers; and informal health providers. A total of 90 in-depth interviews (IDIs) and 12 focus group discussions (FGDs) were conducted (Table 1 ). Data were collected between October and November 2022.

Data analysis

The analysis followed a systematic approach, including familiarization with the data, coding, identification of themes and interpretation. Regular meetings were held to discuss the coding and resolve any discrepancies among the researchers. Analyses focused on exploring the factors that both encourage as well as hinder community health service delivery in three sub-themes or levels – individual, community/facility and governmental. The analysis process involved double-coding each of the transcripts to ensure the relevance and comprehensiveness of the findings.

Ethical considerations

Ethical approval for this study was obtained from the Health Research Ethics Committee of the University of Nigeria Teaching Hospital, Ituku-Ozalla Enugu State. Permission to conduct the study was sought and obtained from the respondents and traditional leaders of the communities. Written informed consents were obtained from all study participants after they had demonstrated an understanding of study procedures and voluntariness. The confidentiality of all the participants was assured and maintained during and after the study by assigning unique identifiers to each participant during data analysis and reporting.

The result of the analysis is presented in two main themes which are factors that (1) enable or (2) constrain community health service delivery. Each of the main themes is further broken down into three sub-themes or levels: individual, community/facility and governmental.

Factors that promote CHSD

The following factors were found in the study to enhance community health service delivery at different levels:

Individual level

Selfless participation of community members

We found that one of the factors encouraging health service delivery in the communities is community members’ selfless participation in activities that improve CHSD. The members of the community were found to engage in personal activities such as carrying out sanitary activities in the primary healthcare centres as well as providing health equipment such as handwashes, gloves, etc., in a bid to improve the quality of health service provision in the communities. For example, a respondent in Kano State during the interview noted:

We carry out many services in the society like cleaning gutters and sweeping our surroundings, washing and disinfecting hospital, etc. All of this are done voluntarily by the people without expecting any payment at the end.” [WDC member, Kano].

Another respondent in Akwa Ibom noted:

In fact, it is the effort of ourselves that make things work here. The government is less concerned.” [civil servant, Akwa Ibom)].

Synergy between formal and informal providers with community members

At the individual level, informal providers expressed that they were in constant interaction with the formal providers to ensure adequate health service delivery for the community members. This interaction involves informal providers individually referring cases they cannot handle to formal providers to ensure maximum treatment output. The informal providers acknowledged that some cases they encounter are sometimes beyond them and that the best practice is to refer these immediately to the formal providers and that this has helped in ensuring adequate health service delivery output. While trying to buttress this point, a herbalist in Akwa Ibom noted:

Yes, I do refer some injuries that are beyond my ability to a health center because I believe there are some injuries that I can cure and others that I cannot and must refer to health centers. [herbalist, Akwa Ibom].

Compassionate attitude of informal providers

Another factor found to aid health service delivery in the communities at the individual level was the informal provider’s compassion and willingness to help the patients at little or no cost. These providers noted that their priority is ensuring that the patients recover from their illness rather than making monetary gains. This ensured that the patients kept coming to receive services at a reduced rate. A bonesetter in Akwa Ibom in a bid to elucidate this noted:

I’m not sure, but according to information I received from one of the clients referred to me, he should pay the hospital 650,000 naira. I was also considerate with him, and I didn’t take much from him because he was poor. I only charged him 130,000 naira because I was being considerate... the majority of them stay because I have a large house and I don’t mind them staying until they finish their treatment, and while at my place, they feed themselves out of their pockets, while the majority of them come from their homes for their treatment and then return [bonesetter, Akwa Ibom, IDI].

Another respondent in Kano recounts that, although the providers make little money from the job compared with the amount of work they do, it is the passion they have for the job that keeps them going. The respondent noted:

Most of them have passion for it because the little they get from it is really helping them [informal health worker, Kano].

Community/facility level

Synergy between formal and informal providers

At this level, a key factor we identified to be aiding health service delivery in the communities was cooperation between the formal and informal providers. Informal providers were found to cooperate with formal providers to the extent of having a union in the community that serves to regulate their practices. In these meetings, it was found that they shared ideas about how to promote their services. The informal providers were also reported to help in preparing patients for the formal providers to administer treatments. One of the respondents during an interview in Kano while trying to elucidate this synergy among the providers said:

During disease outbreaks, our members help the health workers in managing patients, for instance, we help in moving patients to their respective wards, putting them on beds, and getting drips ready so that by the time the health worker comes to them all is set he/she is just going to start administering treatment... all the health workers in the hospital including the in-charge respect and give us their maximum cooperation [WDC member, Kano, IDI].

Another respondent in Kano noted:

As you can see we (TBAs) are in the antenatal station so we work with them [TBA, Kano, IDI].

An FGD respondent in Kano also added:

Yes, we have linkage and from the ward head up to the district head. We the VCM, normally hold a meeting every month with district heads, to discuss about the health-related problems and if there is need for further assistance the ward head will also report to district head. [volunteer community mobilizer, Kano].

Support from community-based organizations and structures

Support from community-based organizations was also found to aid CHSD at the community/facility level. The existing community structures were found to facilitate the provision of service delivery through directly/indirectly influencing community participation or the provision of health service delivery. These community structures were: faith-based organizations (FBOs), ward development committees (WDC), health facility committees (HFCs) and broader community leadership. These groups were found to be involved in various health activities and other non-health activities in the communities, ranging from capital projects such as the erection of new health centres, after which they handed them over to the government to manage. They organize community empowerment programs, sensitization and health education activities through regular meetings, convening at community ceremonies such as weddings and church/mosque. For example, in one of the interviews in Kano, one of the respondents noted:

For us to achieve our objectives in the communities, we engage the services of the President Generals of the communities; [CHWs], Traditional leaders, faith-based organizations, the Market Women Association, the youths, etc... we normally draw the attention of the community representatives such as the TR, PG, youth leaders, market women leaders, etc. of the need to gather the community members for awareness creation [civil servant, Anambra, IDI].

The ward development committee has really helped to breach the gap between the community and the health facility so whatever you need to do in terms of mobilization and sensitization, they are always there, they help when we’re planning for advocacy visits, anytime you call them they render their support [officer-in-charge1, Akwa Ibom, IDI].

Governmental level

Government/partner’s support to community-based formal and informal providers

At this level, the support from both government and non-governmental organizations to community-based formal and informal providers was seen to aid CHSD. For example, informal providers were trained, supported and incentivized by NGOs that provide formal services to identify and refer illness cases to a central facility for treatment in Kano. Also, the TBAs noted that they receive items such as gloves, cleaning agents, etc., from the local government health authorities as a way to support them in attending to cases within their capacities and incentivize them to make quick referrals to the formal providers. A respondent in Anambra noted:

My organization trained [CHWs] and community volunteers on how to handle compassion fatigue… Yes of course, we have to educate them on what to do in the community before they start, this will help to guide them against abuse” [medical doctor, NGO, Anambra, IDI].

Another respondent also said:

We organize training, we train the CORPs, we train the CVs – the community volunteers and the community resource persons [civil servant, Anambra, IDI].

Speaking during an FGD in Kano, a TBA reflects:

...we’re really enjoying the training because the training is encouraging us, and like before most of the women, when they give birth at home they don’t care to go to the hospital but now as a result of our work they do come to the hospital, and all happens as a result of the training, and all these are among our work, and now even giving birth at home is very rare... [TBA, Kano, R6, FGD].

Clear line of communication

We also found that another factor that enhances CHSD at the governmental level is ensuring a clear line of communication among the health partners, the government and the community. This made it easy to ensure that interventions were directed to the right people. A respondent in Anambra during the IDI threw more light on this when the respondent said:

If any partner is coming to the state to support the state, for family planning programme, they will come through me. Then we go down to the LGAs. The LGA have the RA supervisor at the LGA level, and then we move down to the community, then we have facilities where we implement all these programmes” [civil servant, Anambra, IDI].

Factors that constrain CHSD

These factors were found to impede efficient community health service delivery at different levels.

Poor health-seeking behaviours/preference for quacks

The result of the study revealed that one of the factors impeding CHSD was the inability of the community members to seek health advice from experts; poor health-seeking behaviour, quack patronage, the tendency to receive services from people that are proximal to their homes and people they know rather than professionals; and the inability to go to the hospital on time to access care until the illness worsened. One of the respondents during the interview said:

That has been a challenge, honestly, we need to work on that actually. Even at that, people are still patronizing the quack…There is a PHC there, but they prefer to go to the quack and to the TBAs to deliver... [civil servant, Anambra, IDI].

In Akwa-Ibom, a healthcare provider noted that, after visiting a quack, the patients would then come to them when the illness got worse and the quack could no longer handle it. Below is an excerpt from the interview with the respondent.

They go to Chemist and treatment will fail, then they return to us. Some go to the Chemist with the name of the drugs and the chemist will hardly ask them questions [officer-in-charge1, Akwa Ibom].

Male dominance

Male dominance was found to be a problem, especially in Kano. This factor involved males refusing to comply with health workers/providers in the community. These males were also found to prevent their wives from receiving care such as going for antenatal and having their children immunized. A respondent in Kano elucidated this problem when she noted:

The main problem is noncompliance from the men in the community, in many cases, the women give their full support to us but their husbands prevent them from attending ante-natal or accepting immunizations for their babies [TBA, Kano].

Superstitious/cultural belief

The results also revealed that superstitious belief/cultural belief was a factor impeding CHSD at this level. The belief was found to revolve around local and religious perceptions about different aspects of health such as birthing and illnesses. These beliefs were observed to cut across societal spiritual stereotypes attached to health, political and fetish interferences and lack of community awareness. This belief was captured by one of the respondents during the interview in Akwa-Ibom when the respondent said:

You know our people believe prophesy, that woman can see well if the person will not be able to deliver, she used to pray, so many TBAs have prayer houses which our women can live there for 1 month before the delivery time [officer-in-charge1, Akwa Ibom]

While reacting to the issue of the cultural belief, a respondent in Anambra also noted:

Again, is what people say about ntutu (a native malicious charm characterized by the mysterious injection of tiny metal pin-like objects into the victim’s body) – all these things contribute to the disruption of healthcare. Because when someone has serious typhoid and malaria, or serious illness inside the person, the person will focus on going to remove the ntutu. By the time they will come to hospital, things have gotten worst” [public servant, Anambra].

Poor attitude of facility workers

Another factor we found to be constraining service delivery in the communities at this level is the poor attitude of the formal providers in the facility which is mostly reflected in absenteeism. This was elucidated by a community leader in Anambra when he noted:

When you get there, you will only see a nurse there and the doctor might be working in Awka. He won’t be coming all the time. When you get there the nurse will be giving you first aid treatment while waiting for the doctor. Will you say that they are not there? The nurse will press you water while you wait for the doctor and the doctor might end up not coming that day while the person keep waiting. So that is the challenge [community leader, Anambra].

During an FGD in Akwa Ibom, a respondent also noted:

This patronage to PMVs happen because there aren’t enough workers at the health centres and the health centers are closed early or not even open sometimes, especially during weekends. Most people use the PMVs and TBAs when they have no other option because there aren’t enough workers at the health center. This means that there should be enough staff at the health center and people will see reasons to visit the health center instead of using the PMVs [trader, Akwa Ibom].

Lack of adequate financial support from the government

The result revealed that one of the major factors constraining health service delivery was the lack of adequate financial support for healthcare providers to carry out their activities. This lack of funds was, for example, seen in poor remuneration for the field workers, the problem of owing health workers by the government, delay in payment of monthly salary, lack of funds for nutrition officers, lack of a Community-based Management of Acute Malnutrition (CMAM) centre in Akwa Ibom where acute malnutrition can be managed, etc. One of the respondents in Kano while trying to buttress the issue noted:

Yes, our biggest challenge is finance. We have the zeal to do many things but our constraint is finance. We are able to achieve some of our aims...the biggest challenge we face so far is lack of financial support from the government [WDC Member, Kano, IDI].

Another respondent in Anambra also noted:

Our major challenge has been lacking the funds to carry out some of the activities we want to do [chief security officer, Anambra].

The lack of financial support was also seen to affect the availability of cash to pay volunteers adequately, which also caused setbacks; this problem was captured by a respondent in Anambra:

The meagre amount paid to the volunteers is a serious setback… [volunteer health worker, Anambra,

Embezzlement of funds

Another major problem we found in the study constraining CHSD at the governmental level was the embezzlement of funds budgeted for healthcare in the communities. This corrupt practice cuts across the whole health system down to government officials and elites in society. To elucidate this problem, a formal provider in Anambra noted that:

There was one man that came here, that time was like they are doing sickle cell program for the State. It is government-funded or foreign government-funded. During the Mr. X’s governorship regime, they brought the money, but a sitting government official took it [medical doctor, NGO, Anambra].

Lack of social amenities

From the result, we found that another governmental-level factor limiting the progress of community health service delivery is the lack of social amenities in the communities such as water, electricity, security, adequate living quarters for healthcare workers, etc. The lack of electricity was emphasized, as it prevents pregnant women from accessing the healthcare centre at night. An example of how this constrains service delivery was captured by one of the respondents during the interview in Kano:

These sectors can because if there is no water in the hospital, there is a big problem, you see, water is very important because whatever that you are going to take, you have to use water, in conducting delivery, in the lab, because you have to wash some items before use or after use, in the hospital environment even the toilet, the staff toilet, outpatient toilet, everything, you have to use water. Water is very essential for the community health [matron, Kano, IDI].

While reacting to the issue of security, a respondent in Akwa Ibom noted:

But the fear is when you do all these things without security, something can happen cos when I came in here. I had a little experience, thieves came and removed all the fans that were here, about 8 fans, and picked all the drugs [officer-in-charge2, Akwa Ibom].

The lack of accommodation or living quarters inside the healthcare facilities for healthcare workers was also buttressed by another respondent in Akwa Ibom:

...but we are still praying that one faithful day, those ones they have not been giving us, they will give, because here now, we are supposed to have a quarters... one thing is the quarters here, the space is very big, they supposed to build quarters here and they are complaining, they supposed to build quarters, the community gave the government this land to build of which they have not [officer-in-charge1, Akwa Ibom, IDI].

Poor data record/data management

The result also revealed that the problem with health data collection and management was another factor constraining CHSD by affecting the utilization of health data for planning and decision-making. This problem was found to accrue from limited human resources and lack of training of data officers by the government. In a bid to elucidate this problem, a respondent said:

We have issue with data collection because we don’t have enough human resources for health. So, data collection has been a problem. You know, they are trying, but need training. At times, they lack the tools to collect data, but we are trying to address it. If we have enough human resources for health, we will deploy them to these facilities to help to generate every data and assign that role to them [civil servant, Anambra, IDI].

Result summary Table 2 presents the identified factors enhancing CHSD in the communities respectively at individual, community/facility and governmental levels. Table 2 presents a summary of identified factors constraining CHSD in the communities respectively at individual, community/facility and governmental levels.

The findings that, although CHSD within Nigerian communities is plagued with multi-level challenges, there are also multi-level factors playing roles in enhancing CHSD underscores the point that efforts are still being made to ensure an improved CHSD within the communities at different levels. These efforts were seen predominantly at the individual level, which highlights the power community members wield in improving healthcare in their communities rather than waiting on others, thus, highlighting the imperative role of community participation as noted in a recent study [ 23 ].

The synergy between formal and informal providers was found to be a key factor in enhancing CHSD both at individual and community/facility levels. This finding further supports the importance of ensuring a sustained healthy relationship between the informal and formal healthcare providers in ensuring improved healthcare service provision in communities as previously emphasized by other researchers [ 24 , 34 ]. Furthermore, at the community and facility level, support from community-based organizations (CBOs) was found as an enabler, as has been also identified in Nepal, although these were challenged by weak governance [ 31 ], and in China, where a community delivery model based on community structures was found to improved user satisfaction [ 32 ].

At the governmental level, NGOs partnering with the government to support formal and informal providers in the communities were also seen to help improve health service delivery in the communities. This finding further supports the findings of [ 35 ] that NGOs play a vital role in strengthening healthcare service delivery in low- and middle-income countries around the world.

The results are also consistent with the work of other researchers within Nigeria. For example, the current study supports the findings from the works of Amedari and Ejidike [ 18 ], Obansa and Orimisan [ 19 ], Okereke et al. [ 13 ] and Welcome [ 20 ], which identified factors constraining health service delivery in Nigerian communities as centring on corruption across the health system, poor management of human resources and lack of funding from the government. This raises the concern that these problems may have lingered because of negligence or enough not being done to curtail it by relevant stakeholders, hence pointing to the urgent need to create more awareness of the dangers of these constraining factors on CHSD and CHS as well as calling for more concerted effort to address these challenges. This also highlights the need for the possible adoption of a different approach to addressing these challenges. One such different approach could be the exploration of a joint regional effort from African leaders to effectively address these challenges since some of the factors found to impede CHSD within Nigeria such as lack of funding and basic amenities from the government are also those reported by the Nigerian National Population Commission [ 17 ] to affect healthcare service delivery in other African countries.

Although there are multi-level factors identified to be impeding CHSD in Nigeria by the present study, the majority of the factors were identified to stem from the governmental level. Interestingly, these challenges lead to others, indicating that successful eradication of a challenge can resolve other challenges. For example, the lack of adequate financial support, embezzlement of funds, lack of social amenities and poor data management were among the factors found to be impeding the progress of health services in the communities. By adequately addressing the issue of embezzlement of public funds, the issues of inadequate financial support, lack of amenities and poor data management can invariably be resolved to a reasonable extent; this is because the reason for the lack of social amenities, data management and other financial support could be because the funds provided for such are embezzled or mismanaged. Therefore, by setting up functional accountability structures involving the community members where every fund coming into the communities for health be it as a donation or government funding is accounted for, there is a possibility that this will also increase community participation in health as well as enable the communities to serve as “accountability police” for health projects, thus ensuring that funds are efficiently utilized in the execution and delivery of community health services.

The poor attitude of healthcare facility workers in Nigeria especially in the form of absenteeism has been reported by studies to be a cog in the wheel of development for CHSD in Nigeria [ 25 , 26 ]; our study finding was able to validate this by indicating that this facility-level constraint is still a key factor impeding the progress of CHSD in Nigerian communities. According to these studies [ 25 , 26 ], absenteeism is fueled by the government’s inability to provide adequate human resources in health facilities. This highlights the interrelatedness of the constraining factors across different levels in the current study. Furthermore, the unavailability of healthcare workers in the facility (a facility-level factor) may in turn explain why community members prefer to seek care among quacks (an individual-level factor) since these quacks are more proximal, are easy to access and affordable and easily share the same cultural preferences and beliefs with the community members [ 27 , 28 , 29 ].

Our study also revealed that cultural/superstitious beliefs negatively impact community health service delivery and consequently the community health systems in Nigeria. The influence of sociocultural factors on healthcare service delivery in Nigeria has been long documented by Odebiyi [ 30 ]. These cultural/superstitious beliefs (a community-level factor) may also explain the refusal of males to let their wives go for antenatal and immunization services, which the current study identified as a constraining factor at the individual level.

The interrelated nature of these constraining factors across the levels and the over-dependence on the government to tackle these challenges alone may explain why these factors have lingered. Therefore, involving more hands was seen as a key solution. The introduction of a multi-sectoral action where different health and non-health sectors can collectively work towards addressing these challenges at various levels may be more effective than expecting the government to do it alone. Since these challenges occur at different levels, different sectors that function at each level can focus on addressing challenges within their operational level first, before tackling them at a broader level. Evidence [ 21 , 22 ] has also shown that multi-sectorial collaboration is an effective approach to addressing different health challenges.

Limitation of study

Our study was not able to cover more states in the geopolitical zones already covered as well as new geopolitical zones in Nigeria such as Southwest due to limited resources.

Conclusion and recommendations

Achieving an enhanced CHS is possible. However, this is largely dependent on how well actors in both health and non-health sectors prioritize and adequately address the multi-level challenges constraining CHSD while sustaining the factors that promote it. CHSD through functional CHS can help improve strengthening of overall health systems and lead to improved health at the community level while ensuring the achievement of universal health coverage. Decision-makers should integrate CHSD in all program implementation that involves communities and ultimately work with CHS as a veritable platform for effective health service delivery.

Since the findings show that efforts are being made to improve community healthcare service delivery, the underlying argument therefore could be that these efforts are not substantial enough to produce the significant output needed for an optimal CHSD within the communities. This draws attention to the need for a joint approach that ensures the sustenance of the enabling factors while simultaneously addressing the identified challenges to boost the effort.

Also, it is possible that identifying and rewarding exceptional community actors that contribute to improving health service delivery in the communities by the leaders of the community and other stakeholders can encourage the sustenance of the identified enabling factors, especially at the individual level since studies have shown that reinforcements can help sustain positive attitudes [ 14 , 15 , 16 ].

Availability of data and materials

The dataset used for this study is available and can be obtained from the corresponding author upon request. No datasets were generated or analysed during the current study.

Abbreviations

Community health system

Community health service delivery

Traditional birth attendants

In-depth interview

Officer-in-charge

Community-based management of acute malnutrition

Focus group discussion

Patent medicine vendors

Universal health coverage

Sustainable Development Goals

Primary healthcare

Civil society organizations

Non-governmental organizations

Local government area

Community volunteers

Faith-based organizations

Ward development committee

Health facility committees

Informal health worker

Volunteer community mobilizer

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Acknowledgements

We wish to acknowledge the Bill & Melinda Gates Foundation as well as the African Health Observatory Platform (AHOP) for their support in helping to ensure the completion of this study.

The research project which led to the results included in this manuscript received funding from the Bill & Melinda Gates Foundation. However, the funding does not cover publications. The funders did not participate in designing the study, collecting and analysing data, or writing and reviewing the manuscript. The views expressed in this manuscript belong exclusively to the authors and do not necessarily represent the funders’ opinions.

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Enyi Etiaba and Obinna Onwujekwe conceptualized and designed the study. Okechukwu Ozor and Enyi Etiaba participated in data collection. All authors took part in data analysis. Okechukwu Ozor wrote the first draft of the manuscript. All authors reviewed and approved the final version of the manuscript.

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This study received ethics approval from the Health Research Ethics Committee of the University of Nigeria Teaching Hospital Enugu with reference number NHRECAS/01/2008-WA00002458-IRB00002323. All methods were conducted according to relevant guidelines and regulations. All participants were informed of the purpose of the research, the rights of participants and measures to protect them and their data. Written, signed and verbal informed consent was also obtained from all the participants. Participation in the study was voluntary and confidentiality was ensured.

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Ozor, O., Etiaba, E. & Onwujekwe, O. Strengthening the effectiveness of community health system: Assessing the factors that enhance or constrain the delivery of health services within communities in Nigeria. Health Res Policy Sys 22 , 124 (2024). https://doi.org/10.1186/s12961-024-01204-9

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DOI : https://doi.org/10.1186/s12961-024-01204-9

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Abstract: Underwater communication is essential for environmental monitoring, marine biology research, and underwater exploration. Traditional underwater communication faces limitations like low bandwidth, high latency, and susceptibility to noise, while semantic communication (SC) offers a promising solution by focusing on the exchange of semantics rather than symbols or bits. However, SC encounters challenges in underwater environments, including semantic information mismatch and difficulties in accurately identifying and transmitting critical information that aligns with the diverse requirements of underwater applications. To address these challenges, we propose a novel Semantic Communication (SC) framework based on Large Language Models (LLMs). Our framework leverages visual LLMs to perform semantic compression and prioritization of underwater image data according to the query from users. By identifying and encoding key semantic elements within the images, the system selectively transmits high-priority information while applying higher compression rates to less critical regions. On the receiver side, an LLM-based recovery mechanism, along with Global Vision ControlNet and Key Region ControlNet networks, aids in reconstructing the images, thereby enhancing communication efficiency and robustness. Our framework reduces the overall data size to 0.8\% of the original. Experimental results demonstrate that our method significantly outperforms existing approaches, ensuring high-quality, semantically accurate image reconstruction.

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