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Environmental
Health Perspectives Supplements Volume 110, Number 2, April 2002
Community-Based Participatory Research as a Tool to Advance Environmental Health Sciences
Liam R. O'Fallon and Allen Dearry
Office of Program Development, Division of Extramural Research and
Training, National Institute of Environmental Health Sciences, Research
Triangle Park, North Carolina, USA
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Full Article in PDF
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Abstract
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 community 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-university
partnerships serve to advance our understanding of environmentally related
disease. In this article, the authors highlight 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 mechanisms of disorders having an environmental etiology,
reduce adverse health outcomes through innovative intervention strategies
and policy change, and address the environmental health concerns of community
residents. Key words: community-based participatory research, translational
research, environmental health sciences, environmental justice, community
outreach, health disparities, children's health. Environ Health Perspect
110(suppl 2):155-159 (2002).
http://ehpnet1.niehs.nih.gov/docs/2002/suppl-2/155-159ofallon/abstract.html
This article is part of the monograph Advancing Environmental
Justice through Community-Based Participatory Research.
Address correspondence to L.R. O'Fallon, 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.
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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, minimizes suffering and improves
the quality of life of the American public (1-9). To prevent disease
effectively we must first understand 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 approaching 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 illnesses. 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 (physical or social).
Researchers apply this model to the study of health outcomes (e.g., cancer,
birth defects, asthma/respiratory diseases, infertility, autoimmune diseases,
neurodegenerative and developmental disorders), environmental exposures (e.g.,
pesticides, heavy metals, radiation), and the early molecular events that initiate
the disease process (e.g., DNA damage, apoptosis). Much is already known about
these three components individually. However, relatively little is known about
the initial "triggers" that start the disease process. Without understanding
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 innovative initiatives
that begin to bridge the gap between researchers and community residents. NIEHS
envisioned that the partnership 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 prevention
research.
Community-Based Participatory Research at NIEHS
Guided by renewed interest in community-based participatory approaches to
public health (11-17), NIEHS began applying these methodologies
to preventive research to better meet the immediate environmental health needs
of affected communities, especially socioeconomically and medically disadvantaged
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 findings from basic, clinical 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 participatory research (CBPR), which
the Institute defines as "a methodology that promotes active community involvement
in the processes that shape research and intervention strategies, as well as
in the conduct of research studies" (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 (13-20) and interactions with practitioners
(11), NIEHS endorses the following principles for effective CBPR:
Promotes active collaboration and participation at every stage of research
(13-15). 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
highlight this feature include Environmental Justice: Partnerships for Communication,
Community-Based Participatory Research, and Centers for Children's Environmental
Health and Disease Prevention Research (21,22). In these programs, all
projects demonstrate collaboration between environmental health scientists and
members of community organizations.
An example of active community participation in the research process within
the NIEHS CBPR initiative is the project Preventing Agricultural Chemical Exposure
(PACE) in North Carolina (23). The academic researchers in this project
work with two populations--migrant farmworkers and tobacco growers. Recognizing
that a partnership 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
organization; b) a project advisory committee; c) community forums
for residents more active in the research process; d) public presentations
for less active residents; and e) formative 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 participation included transportation
and meeting times. On occasion, researchers would provide transportation to
residents and convene community forums at times convenient to the population.
On the basis of community interaction, researchers developed a two-phase intervention
to reduce farmworker exposure to harmful agricultural chemicals. In the first
stage, field safety promoters received training in agricultural safety and health
to serve as a resource to other workers. In the second stage, project staff
and field safety promoters presented a Worker Protection Standard (WPS)-certified
training course. After completing 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-university 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 contribute 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--information
that can be used to inform hypothesis generation and data collection.
The Southeast Halifax project, a partnership 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 hazardous substances from intensive livestock operations surrounding
predominantly African American and poor rural communities and the resultant
health impact upon residents. The first question addressed was whether a quantifiable
environmental injustice existed. Residents helped researchers collect 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 operations (27,28). Ongoing collaborative work seeks to explore
further the relationship of such symptoms to groundwater and air contaminants
associated with livestock operations. 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 formulation 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 projects are guided by the environmental health issues or concerns of
community members.
NIEHS recognizes that for research and prevention/intervention strategies
to be successful, they must address the concerns of the community residents.
Therefore, all CBPR projects supported by the NIEHS build upon needs identified
by the community. An additional impetus for Translational Research program initiatives
at the NIEHS is the need for community residents to acquire scientific 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 community
has been a driving force behind each stage of the research process. Through
a successful collaboration with the Columbia University, Joseph L. Mailman School
of Public Health, community members help design, implement, and participate
in multiple research projects. This community-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's Centers programs. One joint study demonstrated
a correlation between high concentrations of particulate matter (
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
concern to residents because of the high asthma rates in children. Residents
used data collected from the study to inform city officials of the potential
health risk. As a result, officials closed a bus depot in close proximity to
an elementary school. In a similar collaborative study, researchers and community
members 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 culturally appropriate,
respectful, and understandable 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 biomarkers for pesticide exposure, developing methods to assess
neurobehavioral function in non-English speaking children, and 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 challenge to disseminating findings
to everyone. Community meetings and sharing of collected data (e.g., biomarkers
and neurobehavior test results) with families are two effective ways in which
investigators are communicating research results to participating 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 discussions on farmworkers' beliefs and practices. This video is used
to educate families on how they can minimize contact with pesticides in and
out of the home.
Ensures research and intervention strategies are culturally appropriate
(13-15,19). With active participation of community residents from the
beginning, research and intervention strategies are more likely to be based
in the cultural context of the community in which such work is intended to benefit.
The Tribal Efforts Against Lead (TEAL) project in northeast Oklahoma demonstrates
how CBPR assures that research and intervention strategies are appropriate to
the affected community. With residents involved in the research process from
the beginning through a community advisory board, academic scientists were assured
that their efforts would be responsive to the needs and concerns of the residents.
In designing and conducting 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 community 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 audience. Preliminary
data show that there has been a statistically significant drop in the child
blood lead levels. In addition, this collaborative research effort has had an
impact on local and state policies. For example, community residents were able
to use information collected in this project to persuade City of Miami officials
to explore regulation of chat (tailing piles left over from mining operations)
in construction. In addition, research findings from this project helped to
convince a Governor's Task Force to support continued soil remediation (33).
These outcomes demonstrate how results from joint community-university
research projects can impact regulatory and policy decisions.
Defines community as a unit of identity. One of the greatest challenges
to CBPR is defining "community" because of its many socially constructed dimensions.
For example, community could be defined as residents within a town, an ethnic
population, a set of workers, or apartment building residents. Units of identity,
such as family membership, social networks, or neighborhoods are created and
recreated through social interactions (13). Because of its dynamic and
diverse nature, no one definition 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
scientists and community partners from underserved communities. In the case
of these projects, community is typically characterized by a sense of identification
and emotional 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
different communities through a variety of means. For example, the Southeast
Halifax project identified 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
operations addressed. The community was well defined prior to the researchers'
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 identified 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
recognized that partnering solely with the community organization would not
provide them with the necessary level of participation. Consequently, researchers
reached out to the larger affected community to ensure greater participation
so that the project and intervention could be designed in a culturally 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 representatives 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 facilitated investigators' interactions
with the affected communities by helping investigators interpret data and distribute
information to the communities, selecting members to become Clan Mothers and
Clan Fathers, and developing and conducting the training. In this project, the
advisory board represented the community with a shared interest in lead exposure.
CBPR Benefits Scientists and Communities
The challenges of implementing and supporting CBPR are well documented (11,13,
34). Chief among these challenges is ensuring participation on the part
of universities, health departments, funding agencies, and federal institutions
because CBPR may not necessarily fit within their research or funding 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 benefits of
CBPR to universities, state and local health departments, funding agencies,
and federal institutions.
Outcomes from CBPR projects demonstrate a number of benefits of this methodology
for both academic researchers and community members (11,13). These benefits
depend upon the strength of communication and cultural understanding among all
partners. Although communication is not the only aspect crucial to successful
CBPR, without it the benefits of CBPR will not be realized. As shown in Figure
1, communication must remain a constant element throughout the entire spectrum
of community-university interaction. On the basis of previous work (11,13)
and the positive outcomes from the five highlighted examples in this article,
NIEHS emphasizes the following benefits of CBPR for both researchers and community
members:
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Figure 1.This figure illustrates the importance
of communication for achieving benefits from CBPR projects. These benefits
begin with and are maintained by honest communication among all partners
in the research project. Each benefit is enhanced by the preceding benefit.
That is, greater trust translates into increased relevance of questions,
which assures better quality data, and so on.
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Trust between researchers and community. By involving community members
in every stage of the research process and communicating findings to them in
culturally appropriate and understandable terms, CBPR enhances trust between
the researcher and the community. Historically, communities have often been
seen as cohorts rather than full partners in the research process (11,16-18).
Communities often did not receive information from investigators regarding research
outcomes and seldom perceived any benefit from having participated in research
projects. As a result, community 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 relevant 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 question is of concern to individuals
within the community, more residents participate. This positive relationship
enhances recruitment 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 identified community, the
data collected are more likely to be applicable to the scientific 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
constructed network. If the community possesses a sense of active participation
in a research project, they are more willing to assist in dissemination of the
findings. 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 significantly
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 benefits 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'
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 project 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-university partnership
to expand its work into multiple future research projects. Such collaborations
are often successful in obtaining numerous means of support and in leveraging
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 successful, innovative translational research
program to address the environmental health concerns of socioeconomically disadvantaged
communities throughout the United States. The success of its initiatives has
been due, in part, to the Institute's encouragement of community-university
partnerships that adhere to the six principles highlighted in this article.
The projects discussed and the benefits enumerated demonstrate how CBPR can
be an effective tool to enhance our knowledge of the causes and mechanisms of
disorders having an environmental etiology and also to reduce adverse health
outcomes by affecting policy change and developing culturally appropriate intervention
strategies.
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Last Updated: March 27, 2002
