Community-Based Participatory Research as a Tool to Advance

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Environmental Health Perspectives " VOLUME 110 | SUPPLEMENT 2 | April 2002 155 NIEHS Mission: Disease Prevention Disease prevention is the most effective form of healthcare because it protects people from illness, and as a result, saves money, mini- mizes suffering and improves the quality of life of the American public ( 1 39 ). To pre- vent disease effectively we must Irst under- stand fully the cause of an illness and change the conditions that permit it to occur. However, people are exposed to myriad environmental factors, physical as well as social, on a daily basis that could adversely affect their health.

In addition, everyone has different genetic predispositions to disease and different probabilities for exposure. At the National Institute of Environmental Health Sciences (NIEHS), researchers strive to understand disease end points that result from environmental exposures by approach- ing health as an integrated response of all organ systems over time to the environment. Unique within the National Institutes of Health, NIEHS focuses on the prevention of disease rather than on the treatment of ill- nesses.

To guide research efforts at NIEHS, human health is conceived as the interaction of age (time and/or duration of exposure), susceptibility (genetics), and exposure (phys- ... more. less.

ical or social). Researchers apply this model to the study of health outcomes (e.g., cancer, birth defects, asthma/respiratory diseases, infertility, autoimmune diseases, neurode- generative and developmental disorders), environmental exposures (e.g., pesticides, heavy metals, radiation), and the early mole- cular events that initiate the disease process (e.g., DNA damage, apoptosis). Much is already known about these three compo- nents individually. However, relatively little is known about the initial ctriggers d that start the disease process. Without under- standing this, it is difficult to intervene to prevent disease. While preventive research can enhance our understanding of the early steps of the disease process, the Institute also recognizes the necessity of addressing environmental health concerns of community members while research is ongoing ( 10 ). In response to these needs, NIEHS established innova- tive initiatives that begin to bridge the gap between researchers and community resi- dents. NIEHS envisioned that the partner- ship of these two groups would address community environmental health issues, while enhancing basic etiologic and exposure assessment research as well as facilitating the development of novel approaches to preven- tion research. Community-Based Participatory Research at NIEHS Guided by renewed interest in community- based participatory approaches to public health ( 11 317 ), NIEHS began applying these methodologies to preventive research to better meet the immediate environmental health needs of affected communities, espe- cially socioeconomically and medically dis- advantaged populations. NIEHS initiated a Translational Research Program in the early 1990s to link researchers and community residents by encouraging collaborative research projects. The purpose of the program is to refine intervention methods, provide exposure assessment data, study environmental disease etiology, and facilitate the conversion of Indings from basic, clini- cal or epidemiological environmental health science research into information, resources, or tools that can be applied by healthcare providers and community residents to improve public health outcomes in at-risk neighborhoods. Community-based partici- patory research (CBPR), which the Institute defines as ca methodology that promotes active community involvement in the processes that shape research and interven- tion strategies, as well as in the conduct of research studies d ( 11 ), constitutes a large part of the Translational Research Program. Six Principles of CBPR With the growing use of CBPR, there is a corresponding need for an agreed upon set of guiding principles for conducting CBPR ( 12 ). On the basis of prior investigations ( 13 320 ) and interactions with practitioners ( 11 ), NIEHS endorses the following princi- ples for effective CBPR: Promotes active collaboration and partici- pation at every stage of research (13 315). CBPR fosters equal participation from all partners. It provides all participants with an equal sense of ownership over the research and the outcomes. Prominent initiatives within the NIEHS Translational Research Program that high- light this feature include Environmental Justice: Partnerships for Communication, Community-Based Participatory Research, and Centers for Children 9s Environmental Health and Disease Prevention Research ( 21,22 ). In these programs, all projects demonstrate collaboration between environ- mental health scientists and members of community organizations. An example of active community partici- pation in the research process within the NIEHS CBPR initiative is the project Preventing Agricultural Chemical Exposure This article is part of the monograph Advancing Environmental Justice through Community-Based Participatory Research. Address correspondence to L.R. O 9Fallon, Chemical Exposures and Molecular Biology Branch, NIEHS, PO Box 12233, 111 TW Alexander Dr., EC-21, Research Triangle Park, NC 27709 USA. Telephone: (919) 541-7733. Fax: (919) 316-4606. E-mail: ofallon@niehs.nih.gov Received 13 August 2001; accepted 8 February 2002. Environmental Justice The past two decades have witnessed a rapid proliferation of community-based participatory research (CBPR) projects. CBPR methodology presents an alternative to traditional population- based biomedical research practices by encouraging active and equal partnerships between com- munity members and academic investigators. The National Institute of Environmental Health Sciences (NIEHS), the premier biomedical research facility for environmental health, is a leader in promoting the use of CBPR in instances where community 3university partnerships serve to advance our understanding of environmentally related disease. In this article, the authors high- light six key principles of CBPR and describe how these principles are met within specific NIEHS-supported research investigations. These projects demonstrate that community-based participatory research can be an effective tool to enhance our knowledge of the causes and mecha- nisms of disorders having an environmental etiology, reduce adverse health outcomes through innovative intervention strategies and policy change, and address the environmental health con- cerns of community residents. Key words : community-based participatory research, t ranslational research, environmental health sciences, environmental justice, community outreach, health dis- parities, children 9s health. Environ Health Perspect 110(suppl 2):155 3159 (2002). http://ehpnet1.niehs.nih.gov/docs/2002/suppl-2/155-159ofallon/abstract.html Community-Based Participatory Research as a Tool to Advance Environmental Health Sciences Liam R. O 9Fallon and Allen Dearry Of#ce of Program Development, Division of Extramural Research and Training, National Institute of Environmental Health Sciences , Research Triangle Park, North Carolina, USA (PACE) in North Carolina ( 23 ). The academic researchers in this project work with two populations 4migrant farmworkers and tobacco growers. Recognizing that a partner- ship with a community-based organization does not always lead to the greatest amount of community participation and that there exist different levels of participation, they use five modes of interaction to assure that the voice of the community partner is heard: a ) partnership with a community-based organi- zation; b ) a project advisory committee; c ) community forums for residents more active in the research process; d ) public presenta- tions for less active residents; and e ) forma- tive data collection. This last method consists of interviews to help investigators learn about community member perceptions of environmental health concerns and gain insight into social networks. Issues that had to be addressed to assure community partici- pation included transportation and meeting times. On occasion, researchers would pro- vide transportation to residents and convene community forums at times convenient to the population. On the basis of community interaction, researchers developed a two-phase interven- tion to reduce farmworker exposure to harmful agricultural chemicals. In the first stage, Ield safety promoters received training in agricultural safety and health to serve as a resource to other workers. In the second stage, project staff and Ield safety promoters presented a Worker Protection Standard (WPS)-certiIed training course. After com- pleting a post-test evaluation, it was evident that many farmworkers still did not receive pesticide training and few were aware of the ways in which they could be exposed. Consequently, researchers modified the intervention slightly by switching the order of the phases to improve worker awareness of health risks from pesticide exposure ( 24 ). The success of the community 3university partnership has led to researchers receiving funding from the North Carolina Department of Agriculture and Consumer Services and two chemical producers, Syngenta and Aventis CropScience, to develop a Spanish language training video on pesticide safety for farmworkers ( 25 ). Fosters co-learning (13,14,16,20). CBPR provides an environment in which both community residents and researchers con- tribute their respective expertise and where partners learn from one another. Community members acquire new skills in conducting research, and researchers learn about community networks and concerns 4 information that can be used to inform hypothesis generation and data collection. The Southeast Halifax project, a partner- ship among the University of North Carolina at Chapel Hill, Concerned Citizens of Tillery (North Carolina), and North Carolina Student Rural Health Coalition (healthcare provider), demonstrates how community residents and investigators learn from one another throughout the research process. In this project, academic researchers work with residents from a rural town in eastern North Carolina to determine the extent of disproportionate exposure to haz- ardous substances from intensive livestock operations surrounding predominantly African American and poor rural communi- ties and the resultant health impact upon residents. The first question addressed was whether a quantiIable environmental injus- tice existed. Residents helped researchers col- lect population and swine operation data, analyze it, and later publish their findings ( 26 ). Results demonstrated that corporate hog operations are more concentrated in poor non-White areas than those run by independent farmers ( 26 ). The next question addressed the potentially harmful effect of intensive livestock operations on the health of surrounding communities. Previous work had demonstrated adverse health effects of intensive livestock operations on workers. Hence, researchers and community members postulated that those communities located within 2 miles of a hog farm could suffer adverse health outcomes. In collaboration with community members, researchers designed a questionnaire to collect data within affected communities. Results from the investigation showed an increase in reported headaches, runny nose, sore throat, excessive coughing, diarrhea, and burning eyes compared to residents of communities not located near intensive livestock opera- tions ( 27,28 ). Ongoing collaborative work seeks to explore further the relationship of such symptoms to groundwater and air cont- aminants associated with livestock opera- tions. Residents and departments of health in other states in the United States are using the methods and results of this research as important factors in considering the formu- lation of stronger laws and regulations to protect them from harmful exposures due to intensive livestock operations. Ensures projects are community-driven (14,15,20) . Research questions in CBPR pro- jects are guided by the environmental health issues or concerns of community members. NIEHS recognizes that for research and prevention/intervention strategies to be suc- cessful, they must address the concerns of the community residents. Therefore, all CBPR projects supported by the NIEHS build upon needs identiIed by the community. An addi- tional impetus for Translational Research program initiatives at the NIEHS is the need for community residents to acquire scientiIc knowledge about environmental exposures in their area that may be used to inform policy and regulatory decisions. West Harlem Environmental ACTion, Inc. (WEACT), is a model of how the com- munity has been a driving force behind each stage of the research process. Through a suc- cessful collaboration with the Columbia University, Joseph L. Mailman School of Public Health, community members help design, implement, and participate in multi- ple research projects. This community 3 university partnership has been successful in obtaining support via numerous means, including NIEHS Environmental Justice, Community-Based Prevention/Intervention Research, Environmental Health Science Core Centers, and Children 9s Centers pro- grams. One joint study demonstrated a cor- relation between high concentrations of particulate matter ( e 2.5 µm) and diesel exhaust particles on the sidewalks in Harlem in New York City and local diesel traffic density ( 29 ). This issue was of growing con- cern to residents because of the high asthma rates in children. Residents used data col- lected from the study to inform city ofIcials of the potential health risk. As a result, ofI- cials closed a bus depot in close proximity to an elementary school. In a similar collabora- tive study, researchers and community mem- bers were able to demonstrate that not only are adolescents exposed to diesel exhaust but that they are suffering from potential lung impairment ( 30 ). Researchers at Columbia University are also working with community residents on a Healthy Home, Healthy Child campaign to enable mothers to protect their children from known environmental health risks for asthma, delays in growth and development, and cancer ( 31 ). Disseminates results in useful terms (13) . Upon completion of CBPR projects, results are communicated to all partners in cultur- ally appropriate, respectful, and understand- able terms. A primary goal of the Translational Research Program at NIEHS is to foster and enhance communication among community members and researchers to more effectively reduce health risks. To this end, NIEHS encourages the development of appropriate education and communication modules. Researchers at Oregon Health Sciences University in Portland, Oregon, work with families of farmworkers throughout Oregon to break take-home pathways for pesticide exposure in children. In collaboration with the Latino agricultural community and other local stakeholders, researchers are assessing household conditions and bio- markers for pesticide exposure, developing methods to assess neurobehavioral function in non-English speaking children, and Environmental Justice " O 9Fallon and Dearry 156 VOLUME 110 | SUPPLEMENT 2 | April 2002 " Environmental Health Perspectives developing culturally appropriate education materials ( 32 ). Investigators in this project use several mechanisms to communicate findings to community members in a culturally relevant and understandable way. The mobile nature of the affected community presents a chal- lenge to disseminating Indings to everyone. Community meetings and sharing of col- lected data (e.g., biomarkers and neurobe- havior test results) with families are two effective ways in which investigators are communicating research results to partici- pating community members. These efforts provide residents with information on research status, implications for their health, and a forum for asking additional questions. Researchers also developed an educational video based on the results of focus group dis- cussions on farmworkers 9 beliefs and prac- tices. This video is used to educate families on how they can minimize contact with pes- ticides in and out of the home. Ensures research and intervention strategies are culturally appropriate (13 315,19). With active participation of community residents from the beginning, research and interven- tion strategies are more likely to be based in the cultural context of the community in which such work is intended to beneIt. The Tribal Efforts Against Lead (TEAL) project in northeast Oklahoma demonstrates how CBPR assures that research and inter- vention strategies are appropriate to the affected community. With residents involved in the research process from the beginning through a community advisory board, acade- mic scientists were assured that their efforts would be responsive to the needs and con- cerns of the residents. In designing and con- ducting intervention research, scientists worked with the Society of Clan Mothers and Fathers. This community group selected intervention strategies, and in collaboration with researchers, developed educational materials and outreach activities to address childhood lead poisoning. Involvement of the Clan Mothers and Fathers was advantageous to the research effort because they were part of the commu- nity and had access to the social circles that the scientists would not have been able to work with otherwise. Their knowledge of local events contributed to the effectiveness of the intervention because Clan Mothers and Fathers were able to reach a wider audi- ence. Preliminary data show that there has been a statistically significant drop in the child blood lead levels. In addition, this col- laborative research effort has had an impact on local and state policies. For example, com- munity residents were able to use informa- tion collected in this project to persuade City of Miami officials to explore regulation of chat (tailing piles left over from mining oper- ations) in construction. In addition, research Indings from this project helped to convince a Governor 9s Task Force to support contin- ued soil remediation ( 33 ). These outcomes demonstrate how results from joint commu- nity 3university research projects can impact regulatory and policy decisions. Defines community as a unit of identity. One of the greatest challenges to CBPR is defining ccommunity d because of its many socially constructed dimensions. For exam- ple, community could be defined as resi- dents within a town, an ethnic population, a set of workers, or apartment building resi- dents. Units of identity, such as family membership, social networks, or neighbor- hoods are created and recreated through social interactions ( 13 ). Because of its dynamic and diverse nature, no one defini- tion of community can be applied to every situation. Therefore, it is important that community ultimately be defined by the people whose health is most likely to be affected by the research ( 17 ). NIEHS Translational Research programs promote collaborations among academic sci- entists and community partners from under- served communities. In the case of these projects, community is typically character- ized by a sense of identification and emo- tional connection to other members through common interests and a commitment to address shared concerns, such as harmful environmental exposures or environmental injustice. NIEHS-supported projects have been successful in addressing the concerns of differ- ent communities through a variety of means. For example, the Southeast Halifax project identiIed a subset of a town in rural eastern North Carolina. In this case, community was a group that recognized themselves as the Concerned Citizens of Tillery, whose desire was to see the issue of intensive livestock oper- ations addressed. The community was well deIned prior to the researchers 9 involvement, thereby facilitating a partnership, because both groups had shared goals and synergistic expertise. Because Concerned Citizens of Tillery knew what they wanted, researchers were able to address their identiIed concerns. The PACE project works with a more fluid community of farmworkers, many of whom originate from different countries (Mexico, Guatemala, Puerto Rico, and Honduras). Although an organization exists to organize these workers, researchers recog- nized that partnering solely with the com- munity organization would not provide them with the necessary level of participa- tion. Consequently, researchers reached out to the larger affected community to ensure greater participation so that the project and intervention could be designed in a cultur- ally appropriate manner. In the end, this project nurtured a sense of community by engaging the farmworkers collectively. The TEAL project has been successful because it established a Community Advisory Board that brings together repre- sentatives from the many Native American Tribes living in Ottowa County, Oklahoma, to address the issue of lead exposure in a coordinated manner. The advisory board provided guidance and direction to the researchers. More than that, the board facili- tated investigators 9 interactions with the affected communities by helping investiga- tors interpret data and distribute informa- tion to the communities, selecting members to become Clan Mothers and Clan Fathers, and developing and conducting the training. In this project, the advisory board repre- sented the community with a shared interest in lead exposure. CBPR Bene dts Scientists and Communities The challenges of implementing and sup- porting CBPR are well documented ( 11,13, 34 ). Chief among these challenges is ensur- ing participation on the part of universities, health departments, funding agencies, and federal institutions because CBPR may not necessarily It within their research or fund- ing paradigm, and the benefits of investing time and money into CBPR may not be immediately clear to these institutions. Through its Translational Research Program, NIEHS has addressed this issue by elucidating the above principles and beneIts of CBPR to universities, state and local health departments, funding agencies, and federal institutions. Outcomes from CBPR projects demon- strate a number of beneIts of this methodol- ogy for both academic researchers and community members ( 11,13 ). These bene- Its depend upon the strength of communi- cation and cultural understanding among all partners. Although communication is not the only aspect crucial to successful CBPR, without it the beneIts of CBPR will not be realized. As shown in Figure 1, communica- tion must remain a constant element throughout the entire spectrum of commu- nity 3university interaction. On the basis of previous work ( 11,13 ) and the positive out- comes from the Ive highlighted examples in this article, NIEHS emphasizes the following benefits of CBPR for both researchers and community members: Trust between researchers and community . By involving community members in every stage of the research process and communi- cating Indings to them in culturally appro- priate and understandable terms, CBPR Environmental Justice " CBPR: A tool to advance environmental health sciences Environmental Health Perspectives " VOLUME 110 | SUPPLEMENT 2 | April 2002 157 enhances trust between the researcher and the community. Historically, communities have often been seen as cohorts rather than full partners in the research process ( 11,16 318 ). Communities often did not receive information from investigators regarding research outcomes and seldom perceived any benefit from having partici- pated in research projects. As a result, com- munity residents have been hesitant to participate in such work with scientists. Active participation by all partners in CBPR counters this skepticism and thereby increases the likelihood for success of a given research project. Increased relevance of research question . Community participation ensures that the research question under investigation is rele- vant to the needs and concerns of both the researchers and affected residents. Without a mutually beneficial research question, the potential impact of the project on public health will be lessened. Increased quantity and quality of data collection . When trust is established among partners in a research project and the ques- tion is of concern to individuals within the community, more residents participate. This positive relationship enhances recruit- ment and retention, which, in turn, improves data quality. Increased use and relevance of data . When research questions are based on issues of importance to both researchers and the iden- tified community, the data collected are more likely to be applicable to the scientiIc hypothesis under study. Moreover, data are useful to the community in addressing their primary concerns. Increased dissemination . Community, in the context of CBPR, is a socially con- structed network. If the community pos- sesses a sense of active participation in a research project, they are more willing to assist in dissemination of the Indings. This effort enables research results to reach a wider audience of both scientists and lay public. Translates research into policy . If research questions are based on community concerns and quality data are collected, there is a sig- nificantly greater likelihood that research findings can ultimately be used to impact policy to benefit the health of the affected community. In other words, the knowledge gained through research beneIts the overall health status of the community. Moreover, such a change in policy and the resulting improvement in population health, even if on a small scale, often serves to highlight the researchers 9 accomplishments to academic institutions and funding agencies. Emergence of new research questions . Through community involvement new ideas are developed and other questions that were not considered at the beginning of the pro- ject are highlighted. As trust increases among researchers and community members, richer dialogue occurs that can open up new research aims. Extend research and intervention beyond specific project . Development of a strong, trusting relationship enables a community 3 university partnership to expand its work into multiple future research projects. Such collaborations are often successful in obtain- ing numerous means of support and in lever- aging resources and expertise to create synergistic outcomes. Builds infrastructure and sustainability . Partnering with community members from the beginning of the research process is an investment in the community. Residents acquire new skills and become leaders within the community, which leads to sustainability of a project. In turn, this infrastructure development leads to more cost effective research and permits scientists to carry out research projects of longer duration and larger scale. Conclusion NIEHS is a leader in biomedical and behavioral prevention research. As part of its mission, NIEHS has developed a suc- cessful, innovative translational research program to address the environmental health concerns of socioeconomically disad- vantaged communities throughout the United States. The success of its initiatives has been due, in part, to the Institute 9s encouragement of community 3university partnerships that adhere to the six princi- ples highlighted in this article. 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