1 Division of Health and Social Behavior, University of California, Berkeley, School of Public Health, 140 Warren Hall, Berkeley, CA 94720-7360, USA
2 School of Medicine, University of California, San Diego, 9500 Gilman Dr., La Jolla, CA 92093, USA
3 Health Inequities Research Unit, Environmental Health Section, San Francisco Department of Public Health, 1390 Market Street, Suite 910, San Francisco, CA 94102, USA
4 Division of Occupational and Environmental Medicine, Department of Medicine, University of California, San Francisco, Box 0920, San Francisco, CA 94143, USA
Correspondence: Margaret W Leung, University of California, San Diego, School of Medicine, 9500 Gilman Dr., Mail Code 0606, MTF Building, Room 180 La Jolla, CA 92093, USA, E-mail: mileung{at}meded.ucsd.edu
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Abstract |
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In recent years a number of epidemiologists have called for a paradigm shift, arguing that modern epidemiology's approach of applying a risk-factor paradigm overemphasizes the individual level of risk to the exclusion of other organizational levels of risk.16 To address the social dynamics of disease as proponents of the sanitary movement once did (before the narrowing of focus that accompanied epidemiology's entry into the eras of infectious and then chronic disease), some have argued that health and disease must be studied at a population level within a social context. Consistent with the call for a paradigm shift, epidemiologists are also calling for increased community participation in the research process.4,79 As Schwab and Syme9 suggest, such an approach:
implies working across disciplines and with the population itself, in defining variables, designing instruments, and collecting data (qualitative and quantitative) that reflect the ecological reality of life in that population, as people experience it.
Within such collaborations, they note, Epidemiologists would not be required to surrender rigor, but they would be required to share power! (ref. 9, pp. 20,50) By adopting a participatory population perspective that emphasizes the social influences on health and disease, epidemiology is in a position to reassert its public health roots by (1) extending the search for causes from the individual to the community and to sociopolitical systems, (2) broadening the methodologies to include qualitative and participatory research methods, and (3) integrating lay knowledge into scientific knowledge.10
Community based participatory research (CBPR) increasingly is being recognized as a promising approach for both incorporating epidemiology's historic concern with the social context of disease and integrating the participatory and action elements that often have been missing from contemporary epidemiological research. An overarching term that encompasses a number of approaches including popular epidemiology,8,11,12 CBPR is defined as:
systematic inquiry, with the participation of those affected by the issue being studied, for the purposes of education and taking action or affecting social change. (ref. 13, p. 1927)
As will be suggested below, popular epidemiology, like other forms of CBPR, complements the accent placed by many of the other new epidemiologies on understanding and preventing disease in a historical, political, economic, cultural, and social context. At the same time, adoption of CBPR principles stressing research with, rather than on communities, affirms the value of communities' experiential knowledge and stresses a collaborative process. In doing so, the field of epidemiology would move away from a tendency towards positivism (a belief, introduced by Comte De Saint-Simon and developed by Auguste Comte, Ernst Mach, Kurt Godel, and others,14 that the scientific method and direct observation are the only sources of knowledge) and instead towards constructivism through which researchers and communities co-create knowledge.15 With its attention to action as an integral part of the research process, CBPR further encourages epidemiology to expand beyond a science that measures associations of exposure and disease, to become a data-driven approach to improve community health and well-being.
Following a brief review of some of the limitations modern epidemiology faces, this paper will describe CBPR's roots and underlying principles and compare and contrast CBPR with modern epidemiology's framework of inquiry. The particular CBPR approach known as popular epidemiology, which distinguishes itself from modern epidemiology both epistemologically and methodologically8 will then be examined in more depth, with examples used to illustrate its utility in studying and acting to address complex health problems. We conclude by highlighting the benefits of CBPR for epidemiology at this critical juncture in its history. Although this paper focuses primarily on CBPR within the social context of the contemporary US, the arguments presented and examples offered should have relevance in a broader international context as well.
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Modern epidemiology and its limitations |
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Modern epidemiological studies tend to rely on surveys or questionnaires for data and sometimes also have values obtained from clinical measure or samples (e.g. blood pressure or blood glucose level). The survey instruments are usually developed under the direction of expert researchers without community collaborators. Since individuals are providing the responses, the level of analysis is at the individual rather than community or population. For example, a study on leisure physical activity might gather information about type and frequency of activity and may even monitor heart rate or pulse during activity, but is unlikely to take into consideration contextual or social factors (e.g. access to recreational facilities or safety of neighbourhood environment) that influence whether and how a person engages in leisure physical activity.
Because of the underlying assumption that studies are designed to discover facts, some epidemiologists assume that it is the responsibility of others, specifically policy makers and public health advocates, to incorporate epidemiological findings into health promotion and disease prevention programmes and policies.16 Yet, the origins of epidemiology suggest otherwise, as famously illustrated in John Snow's research and subsequent actions which tested the political inaction of local authorities and the Board of Health. Using the data he gathered from the cholera epidemic as a guide for what action to take, Snow made a pragmatic decision to remove the handle from Broad Street's water pump despite the refusal on the part of the Board of Health and local authorities to accept Snow's theory and their insistence that cholera spread through the atmosphere.
A number of new approaches have been developed or borrowed from other disciplines which help address some of the objectives mentioned above. Among these are well-designed epidemiological studies combining quantitative and qualitative methods,1719 ecological approaches to the epidemiology of illness and disability,2,2022 and the use of statistical techniques such as hierarchical linear modelling (HLM).2326 This paper is premised on the belief that CBPR offers an additional and particularly promising approach for helping achieve these objectives and increasing epidemiology's relevance in the 21st century.
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A comparison of the frameworks of inquiry: CBPR and modern epidemiology |
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knowledge is constructed socially and therefore ... research approaches...allow for social, group, or collective analysis of life experiences of power and knowledge. (ref. 27, p. 20)The accent on both participation and action in CBPR reflect in part the roots of this approach in both the action research school developed by German social psychologist Kurt Lewin28 in the 1940s and the alternative research paradigms developed by Paulo Freire29 and other third world scholars in the 1970s.30,31 Lewin's action research approach stresses actively involving people affected by a problem in practical problem solving through a cyclical process of fact finding, action, and evaluation. It remains popular in the UK and some other parts of Europe, and to a lesser extent in the US, where its applications tend to be primarily limited to settings such as private industry.32 In contrast, and growing out of the popular education movement in many third world nations, approaches such as participatory action research (PAR) often developed as a direct counter to the often colonizing nature of the research to which oppressed people in Latin America, Asia, and Africa were subjected.29,3335 As such, PAR and other early CBPR traditions in third world nations were premised on the importance of breaking the monopoly over knowledge production by universities not as anti-intellectualism but rather in recognition of the different sets of interests and power relations to which academic researchers and the community people they study are linked. (ref. 36, p. 35) Although contemporary CBPR is composed of a variety of research approaches, such as PAR, feminist participatory research, and popular epidemiology, which vary in their goals and change strategies, they tend to share a set of core principles and values.35,37 As articulated by Israel and her colleagues38 the fundamental characteristics of CBPR are that: (1) it is participatory; (2) it is co-operative, engaging community members and researchers in a joint process to which each contribute equally; (3) it is a co-learning process; (4) it involves systems development and local capacity building; (5) it is an empowering process through which participants can increase control over their lives; and, (6) it achieves a balance between research and action.
As suggested above, CBPR is not a method per se but an orientation to research which may employ any of a number of qualitative and quantitative methodologies. As Cornwall and Jewkes suggest, what is distinctive about CBPR is not the methods used but methodological contexts of their application. What is new is:
the attitudes of researchers, which in turn determine how, by and for whom research is conceptualized and conducted [and] the corresponding location of power at every stage of the research process. (ref. 39, p. 1667)Explicit throughout the CBPR process are the deconstruction of power and the democratization of knowledge. CBPR exposes and challenges the structural powers that oppress groups of people whether subtly or overtly.40 As noted earlier, CBPR shifts the decision-making authority away from experts and embraces the experiential knowledge of the average citizen. Through the process of participation, knowledge becomes democratized such that it is accessible both intellectually and physically, as well as being locally relevant to participants. As a result, participants take equal ownership of the research question and process, making the research outcomes accessible, understandable, and relevant to their specific interests and needs. In contrast, research findings from most conventional epidemiological studies often are inaccessible and irrelevant to the communities that are under study. Researchers report their findings in academic journals using technical language but the affected communities are not usually informed of the overall findings.41 Thus, researchers retain control over the knowledge. We now turn to a closer look at CBPR as an approach that epidemiologists can employ in working to make their research more relevant to communities by co-creating knowledge and generating meaningful data-driven change.39
CBPR is composed of three major and overlapping components: participatory research, education, and social action. Epidemiology can potentially contribute richly to each of these three domains if it can return to the basic value which holds that the field's knowledge base is to support organized community efforts aimed at the prevention of disease and promotion of health.(ref. 42, p. 41) The first step, participatory research, involves people in collectively analysing their community and determining what issues need to be investigated. Selecting issues which the community wants to address validates experiential knowledge and respects the cultural context of the community.38 Moreover, it creates a dialogical process between epidemiologists and community members that can help ensure that the issues addressed are relevant to local interests. With the community playing a key role, epidemiologists may have to put aside their topic of interest and pre-determined methods so that the community can help determine the issue and how it is to be investigated, as well as toward what ends.27 Although epidemiologists lose some power in this process, this is counterbalanced by their gains, as they can learn a great deal about community networks and concerns that may help in generating informed hypotheses and data collection.43 At the same time, the community acquires new skills for conducting research and thus may enhance its community competence or problem solving ability.38
Through education, participants engage in dialogue to develop a critical awareness which in turn enables them to see the relationships between their own community-level health and disease and the larger social structure.44 As noted earlier, although techniques such as HLM increasingly are being used to enable individual health outcomes to be seen in broader community contexts, much modern epidemiology still fails to attend to context because disease can be more easily attributed to individual lifestyles and behaviours that are divorced from the social milieus that influence them.
Findings from epidemiological studies may not be communicated with the community under study for fear that this knowledge would be upsetting, confusing, or both.45,46 By failing to share such knowledge, however, epidemiologists deny the community the opportunity to become more critically conscious of their situation and ultimately to confront the problems uncovered. In this way, epidemiologists may enable further study of different relationships between exposure and outcome, yet at a potentially high cost to the affected communities. By accenting education as a critical part of the research process, CBPR attempts to redress this imbalance.
The third component of CBPR, action, is perhaps the area that most strongly distinguishes this approach from conventional research. In most published epidemiological studies, the implications and translation of findings into research are superficially covered, often in a few brief sentences in the discussion section. In other cases, policy recommendations may be explicitly discouraged or disallowed. In its instructions to authors, for example, the journal Epidemiology notes that:
opinions or recommendations about public health policy should be reserved for editorials, letters, or commentaries, not presented as the conclusions of scientific research.47In contrast CBPR is inherently political, integrating the action step throughout the process. Although the specific course of action to be taken in CBPR depends, of course, on the outcomes and on collaborative decision-making by the community and its outside research partners, action is viewed, as noted above, as an integral component of the research process itself.
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A bridge between knowledge and action: popular epidemiology |
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Although popular epidemiology has been embraced in the field of environmental epidemiology,11,12,51,52 particularly with calls for community-driven research by the US federal National Institute of Environmental Sciences (NIEHS), other areas within epidemiology have been slow in adopting CBPR. The importance of using such an approach bears repeating because of the significant implications epidemiological studies may have in helping to shape policy that in turn can promote community and population health. Major findings from epidemiological studies are not restricted to the academic arena. Popular media plays a powerful role in how issues are framed, influencing the way the public views issues and policymakers make decisions about health policies and practices.53 Epidemiologists therefore have a heightened responsibility to ensure that the outcomes of their studies will be beneficial to the communities that participate.45,46
Popular epidemiology uses lay knowledge and observations to challenge social structural factors and uses political and other means to seek solutions.8 It usually begins with lay observations of health effects and pollutants. As communities begin to organize to find a common perspective, they frequently reach out to external experts to corroborate their experiences, engage in health studies, and act as a primary source of information to those living in affected areas. Throughout this process communities ideally remain in control of the scientific inquiry (or at minimum a respected equal partner).11,12 In Tillery, North Carolina, for example, a low income, African American community suffering from high rates of respiratory and related problems, suspected that these symptoms were related to the rapid proliferation of the hog production industry, with its open cesspools and lagoons that fouled the air and seeped waste water into their wells and yards.51 Community members mapped the location of the hog facilities, determined the depth and construction dates of local wells, and used these data to advocate for change.54 Their popular or barefoot epidemiology laid the ground work for a successful multi-year collaboration with an epidemiology faculty member at the University of North Carolina's School of Public Health, and the local health department. This partnership culminated in a major and multi-pronged US government supported CBPR project that validated the community's initial findings and concerns with carefully co-designed surveys. It also demonstrated a persistent pattern of racial discrimination in the placement of hog industry plants. The research in turn has been used by the community and its academic and professional partners to help bring about ordinances and other actions to help curb these unhealthy practices.51
Popular epidemiology also includes community partners in the interpretation and translation of data. In Contra Costa County, California, for example, community members who were involved in the Healthy Neighborhoods Project, sponsored by the local health department, played a leading role in the interpretation of data they collected from some 500 residents.55 As the health department epidemiologist on this project later reported, their analysis revealed a sophisticated understanding of the connections between problems and issues identified which might otherwise have been completely missed.54
Popular epidemiology differs from traditional epidemiology in its approach to advocacy and activism. Because it is rooted in political action and social movements, it is more aggressive in advocating for larger structural changes. Activism in popular epidemiology can be achieved through three means: seeking to obtain more resources for the prevention and treatment of already recognized diseases, seeking to win government and medical recognition of under-recognized diseases, or seeking to affirm the knowledge of yet unknown aetiological factors in already recognized diseases.11,12 Popular epidemiologists do not shy away from using scientifically accepted methodologies. In some cases, the community may strongly support the need for quantitative documentation.51 In the process of working with researchers, communities can help remedy issues of bias as they learn about the scientific method and the way the scientific community reacts to non-traditional research methodologies.
Environmental epidemiologists have benefited considerably from using CBPR to advance environmental justice51,5660 under the auspices of the NIEHS. They have begun working closely with communities on environmental health issues to increase the understanding of aetiologies and exposure assessment research.43 The environmental scientific community has acknowledged health disparities by race/ethnicity and social class, the disproportionate burden of pollution particular communities face, and the impacts of multiple and cumulative exposures.
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Why should epidemiologists bother with CBPR? |
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The above case study demonstrates some of the advantages of CBPR as an approach to epidemiological research. O'Fallon and Dearry similarly have identified a number of benefits for scientists who conduct CBPR.43 The points listed below expand upon their list and include some additional points with specific relevance to epidemiology.
Trust between researchers and communities
Medical research has a troubling history of abuse epitomized in the notorious Tuskegee Syphilis study62 of the effects of untreated syphilis in black men long after a treatment was discovered, and the US Army's testing of the psychological effects of LSD.63 Such abuses have contributed to community distrust of researchersparticularly communities of colour in the US. Some of the hesitation to participate in research can be countered by having communities become full partners in the research process, beginning with community identification of an issue. CBPR methods particularly lend themselves to research projects undertaken in populations that are other to the researchers. The participation of Australian Aborigines in a diabetes research project conducted by a non-Aborigine enhanced the quality of the data collected and provided immediate benefits for the community by developing and distributing diabetes education material tailored to this community as part of the research process.64 This action component further strengthened community trust and commitment to the research project. With epidemiologists sharing the decision-making in determining the research question, communities that actively participate will perceive the benefits of owning or sharing ownership on the research project. Equal partnership between researchers and communities will increase the likelihood for a successful project with mutual benefits.35,38
Increased quantity and quality of data
With community buy-in and participation, participants are more motivated to ensure that data gathered are meaningful for the local community. Epidemiologists' concerns with poor response rates may be countered, as community leaders and trusted lay people assist in recruiting, retaining, collecting, and recording data from harder-to-reach members of a community. With the community invested in the research process and outcomes, attrition in longitudinal studies may decrease. In a collaborative study between a university and a community based healthy agency surveying for breast and cervical cancer screening behaviour among Korean women, community participation along with cultural sensitivity and competence contributed to a 79% response rate.65 This rate was particularly impressive since the survey targeted an immigrant population that has low response rates for polls and telephone surveys. Community ownership in projects such as this helps validate epidemiological findings and the acceptance of epidemiological instruments in the community.64 For epidemiologists, increased participation, apart from its other benefits, means more data and greater statistical power.
The importance of such increased statistical power is particularly underscored in epidemiological studies looking at racial/ethnic differences in health outcomes, and in which low response rates from already numerically smaller groups often lead to the dropping of these groups and/or the aggregating of participants into an other category.64,66 As the above case study involving Korean women illustrates, active community involvement in recruitment and other aspects of the research may enable epidemiologists to achieve far higher responses rates from traditionally harder-to-reach populations. This in turn may make possible the use of statistical tests in comparisons of multiple racial groups, providing a far richer basis for analysis than is possible when comparing only two or three aggregated groups.
Emergence of new research questions
As in many research projects, secondary research questions may arise that may be directly or indirectly related to the primary research question. These secondary questions can paint a more complex picture of risk than modern epidemiological models of observational studies at the individual level. In the Transgender Community Health Project, discrimination and a lack of primary healthcare for human immunodeficiency virus (HIV)-positive transgendered individuals were common themes.67,68 Studies like this one play a valuable role in pointing to the need for health services research to evaluate how to improve the quality of medical care and public health services for marginalized populations.
Translation of research into locally relevant policy and/or action
Academic epidemiology has been charged with losing touch with public health, focusing on the biomedical aspect of distribution and determinants of disease, and neglecting the politics associated with developing policies for population health.16,69 In Little's words, there is a danger that epidemiology may lose sight of the values which justify its existence as it moves so heavily into a narrowly computational domain. (ref. 70, p. 1144) Some epidemiologists argue that taking a public stand hinders a self-critical approach to scientific research. (ref. 71, p. 1270) However, proponents of CBPR are among those who argue that despite its position as the hard science of public health, epidemiology should not divorce itself from the field's primary mission which is to advocate, create, and assure the conditions in which people can be healthy.42
Applying CBPR principles can also help make findings from epidemiological studies locally relevant and context specific, which is particularly important in the development of meaningful policy and practice. For example, as gun violence was becoming a major public health issue in the US, participation and collaborative research and action on the part of community based organizations, grassroots advocates, health professionals, and law enforcement resulted in a victory for a suburban town in California in its efforts to ban junk guns or poor quality, low cost, and easily concealable hand guns popular among youth.72 Moreover, epidemiologists do not need to wait until after all the data have been collected and analysed before suggesting implications for public health action and practice. Given the gravity and high prevalence of some health outcomes, health education can became part of the data collection process. In the earlier mentioned CBPR study with Aboriginal Australiansa population that has twice the prevalence of diabetes as non-Aboriginal Australiansa community based diabetes intervention involving education materials like a patient handbook evolved from the participatory research process itself.64
Re-evaluation of the nature of epidemiological inquiry
Application of CBPR to research will prompt epidemiologists to consider how their research is conceptualized and conducted within the context of their own biases and the relevance it has to promoting larger structural change to improve the community's health. By broadening the bandwidth of validity (ref. 73, p. 204) to include new choice points or criteria for validity (including, for example, whether the methods chosen will provide a systematic way of engaging people on issues of importance, drawing on many ways of knowing in an iterative fashion, (ref. 73, p. 214), popular epidemiology and other CBPR approaches can inform and enrich the methodological debates and related inquiry. Wing provides a seven-point criteria for how epidemiologists should conduct their research to answer the fundamental questions of why rather than how exposure and disease are related.7 Of all the points, perhaps the most ethically relevant to epidemiologists and their research are the display of humility about the scientific research process and an unrelenting commitment to playing a supportive role in larger efforts to improve society and public health. (ref. 7, p. 84)
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CBPR in the future of epidemiology |
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CBPR is labour and time intensive and involves numerous other challenges as well.74 Epidemiologists must be willing to build relationships with participants, learn from the community, and share both power and their own training and abilities for the good of the community. At the same time, the community must perceive a benefit in the project and the results, be willing to participate in the process and the tasks, and grapple with new concepts such as validity and reliability. The use of CBPR may not always be appropriate. Such an approach should not be attempted, for example, without a commitment to community capacity building and a timeline that permits education and action as part of the research process.
Finally, the motivation for conducting epidemiological research should include not only increasing the knowledge base for public health but also applying that knowledge to support structural changes to promote health and prevent disease. The application of the principles of CBPR in such studies provides guidance for epidemiologists who wish to use their skills and training to advance health promotion and disease prevention with and for the public rather than on the public. At this critical point in its history, epidemiology itself may benefit from further incorporating CBPR, improving the field's ability to study and understand complex community health problems, and demonstrating its commitment to translating findings into action to improve the public's health.
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Acknowledgments |
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References |
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2 Susser M, Susser E. Choosing a future for epidemiology: II. From black box to Chinese boxes and eco-epidemiology. Am J Public Health 1996;86:67477.[Abstract]
3 Pearce N. Traditional epidemiology, modern epidemiology, and public health. Am J Public Health 1996;86:67883.[Abstract]
4 Wing S. Whose epidemiology? Whose health? Int J Health Serv 1998;28:24152.[ISI][Medline]
5 Inhorn MC, Whittle KL. Feminism meets the new epidemiologies: toward an appraisal of antifeminist biases in epidemiological research in women's health. Soc Sci Med 2001;53:55367.[CrossRef][ISI][Medline]
6 Schwartz S, Susser E, Susser M. A future for epidemiology? Annu Rev Public Health 1985;20:1533.[CrossRef]
7 Wing S. Limits of epidemiology. Med Global Survival 1994;1:7486.
8 Brown P. Popular epidemiology challenges the system. Environment 1993;35:1631.
9 Schwab M, Syme SL. On paradigms, community participation and the future of public health. Am J Public Health 1997;87:204952.[ISI][Medline]
10 Nuffield Institute for Health. Directions for health: new approaches to population health research and practice. The Leeds Declaration. University of Leeds, 1993.
11 Brown P. Popular epidemiology and toxic waste contamination: lay and professional ways of knowing. J Health Soc Behav 1993;33:26781.[ISI]
12 Brown P. Popular epidemiology revisited. Curr Sociol 1997;45:13756.
13 Green LW, Mercer SL. Participatory research: can public health agencies reconcile the push from funding bodies and the pull from communities? Am J Public Health 2001;91:192629.
14 Grolier Incorporated. Academic American Encyclopedia Danbury, CT: Grolier Educational Corporation, 1998.
15 Grennon Brooks J, Brooks MG. In Search of Understanding: The Case for the Constructivist Classroom. Alexandria, VA: Association for Supervision and Curriculum Development, 1999.
16 Shy CM. The failure of academic epidemiology: witness for the prosecution. Am J Epidemiol 1997;145:47984.[Abstract]
17 Maruti S, Hwang LY, Ross MW, Leonard L, Paffel J, Hollins L. The epidemiology of early syphilis in Houston, Texas, 19941995. Sex Trans Dis 1997;24:47580.[ISI][Medline]
18 Hatch M, von Ehrenstein O, Wolff M, Meier K, Geduld A, Einhorn F. Using qualitative methods to elicit recall of a critical time period. J Women's Health 1999;8:26977.[ISI][Medline]
19 Nazroo J, Ferrie J, Mein G, Marmot M. Predictors of early exit from the workforce: Findings from the Whitehall II Cohort. Health and Social Surveys Research Group. 2003. http://www.ucl.ac.uk/hssrg/nuffield.html
20 Yen IH, Syme SL. The social environment and health: a discussion of the epidemiological literature. Annu Rev Public Health 1999;20:287308.[CrossRef][ISI][Medline]
21 Robert SA. Socioeconomic position and health: the independent contribution of community context. Ann Rev Sociol 1999;25:489516.[CrossRef][ISI]
22 Lin SS, Kelsey JL. Use of race and ethnicity in epidemiologic research: concepts, methodological issues, and suggestions for research. Epidemiol Rev 2000;22:187202.[ISI][Medline]
23 Hser YI, Shen H, Chou CP, Messer S, Angling MD. Analytic approaches for assessing long-term treatment effects: examples of empirical applications and findings. Eval Rev 2001;25:23362.
24 Kuo M, Mohler B, Raudenbush SL, Earls FJ. Assessing exposure to violence using multiple informants: application of hierarchical linear model. J Child Psychol Psychiatr 2000;41:104956.[CrossRef][ISI][Medline]
25 Craig CL, Brownson RC, Cragg SE, Dunn AL. Exploring the effect of the environment on physical activity: a study examining walking to work. Am J Prev Med 2002;23:3643.
26 Lochner KA, Kawachi I, Brennan RT, Buka SL. Social capital and neighborhood mortality rates in Chicago. Soc Sci Med 2003;56:1797805.[CrossRef][ISI][Medline]
27 Hall B. From margins to center? The development and purpose of participatory research. Am Sociologist 1992;22:1528.
28 Lewin K. Resolving Social Conflicts and Field Theory in Social Science. Washington, DC: American Psychological Association, 1997. (Original work published in 1948.)
29 Freire P. Creating alternative research methods: learning to do it by doing it. In: Hall B, Gillette A, Tandon R (eds). Creating Knowledge: A Monopoly? Participatory Research in Development. New Delhi: Society for Participatory Research in Asia, 1982, pp. 2937.
30 Tandon R. The historical roots and contemporary tendencies in participatory research: implications for health care. In: de Koning K, Martin M (eds). Participatory Research in Health: Issues and Experiences. New Jersey: Zed Books, 1996, pp. 1926.
31 Park P, Brydon-Miller M, Hall B, Jackson T (eds). Voices of Change: Participatory Research in the United States and Canada. Westport, CT: Bergin and Garvey, 1993.
32 Greenwood D, Levin M. Introduction to Action Research: Social Research for Social Change. Thousand Oaks, CA.: Sage, 1998.
33 Fals-Borda O. The application of participatory action-research in Latin America. Int Sociol 1987;2:32947.[ISI]
34 Swantz MJ, Ndedya E, Masaiganah MS. Participatory action research in Tanzania, with special reference to women. In: Reason P, Bradbury H (eds). Handbook of Action Research: Participative Inquiry and Practice. London: Sage Publications, 2001, pp. 38695.
35 Minkler M, Wallerstein N. Introduction to community based participatory research. In: Minkler M, Wallerstein N (eds). Community Based Participatory Research for Health. San Francisco: Jossey-Bass, 2003, pp. 326.
36 Hall B. Looking back, looking forward: reflections on the international participatory research network. Forests, Trees, and People Newsletter 1999;39:336.
37 Wallerstein N. Power between evaluator and community: research relationships within New Mexico's healthier communities. Soc Sci Med 1999;49:3953.[CrossRef][ISI][Medline]
38 Israel B, Schultz AJ, Parker EA, Becker AB. Review of community based research: Assessing partnership approaches to improve public health. Annu Rev Public Health 1998;19:173202.[CrossRef][ISI][Medline]
39 Cornwall A, Jewkes J. What is participatory action research? Soc Sci Med 1995;41:166776.[CrossRef][ISI][Medline]
40 Maguire P. Uneven ground: feminism and action research. In: Reason P, Bradbury H (eds). Handbook of Action Research. Thousand Oaks, CA: Sage Publications, 2001, pp. 5669.
41 Karmaus W. Of jugglers, mechanics, communities, and the thyroid gland: how do we achieve good quality data to improve public health? Environ Health Perspect 2001;109:86369.[ISI][Medline]
42 Institute of Medicine. The Future of Public Health. Washington, DC.: National Academy Press, 1988.
43 O'Fallon LR, Dearry A. Community based participatory research as a tool to advance environmental health sciences. Environ Health Perspect 2002;110:S15559.
44 Yeich S, Levine R. Participatory research's contribution to a conceptualization of empowerment. J Appl Social Psychol 1992;22:1894908.[ISI]
45 Sandman PM. Emerging communication responsibilities of epidemiologists. J Clin Epidemiol 1991;44:41S50S.[CrossRef]
46 Higginson J, Chu F. Ethical considerations and responsibilities in communicating health risk information. J Clin Epidemiol 1991;44:51S56S.[CrossRef]
47 Guidelines for Contributors. Epidemiology 2000.
48 Krieger N, Fee E. Man made medicine and women's health: the biopolitics of sex/gender and race/ethnicity. Int J Health Serv 1994;24:26583.[ISI][Medline]
49 Krieger N, Rowley D, Herman A, Avery B, Phillips MT. Racism, sexism, and social class: implications for studies of health, disease, and well-being. Am J Prev Med 1993;9:S82122.
50 Turshen M. The Political Ecology of Disease in Tanzania. New Brunswick, NJ: Rutgers University Press, 1984.
51 Wing S, Grant G, Green M, Stewart C. Community based environmental justice: Southeast Halifax environmental reawakening. Environ Urban 1996;8:12940.
52 Northridge ME, Vallone D, Merzel C et al. The adolescent years: An academic-community partnership in Harlem comes of age. J Public Health Management Prac 2000;1:5360.
53 Wallack L, Dorfman L, Jernigan D, Themba M. Media Advocacy and Public Health: Power for Prevention. Newbury Park: Sage Publications, 1993.
54 Minkler M. Participatory action research and healthy communities. Public Health Rep 2000;115:19197.[CrossRef][ISI][Medline]
55 El-Askari G, Freesonte J, Irizarry C et al. The Healthy Neighborhoods Project: a local health department's role in catalyzing community development. Health Educ Behav 1998;25:14659.[ISI][Medline]
56 Keeler GJ, Dvonch T, Yip FY et al. Assessment of personal and community-level exposure to particulate matter among children with asthma in Detroit, Michigan, as part of Community Action Against Asthma (CAAA). Environ Health Perspect 2002;110:S17381.
57 Malcoe LH, Lynch RA, Kegler MC, Skaggs VJ. Lead sources, behaviors, and socioeconomic factors in relation to blood lead of Native American and white children: a community based assessment of a former mining area. Environ Health Perspect 2002;110:S22132.
58 Arcury TA, Quandt SA, Russell GB. Pesticide safety among farmworkers: perceived risk and perceived control as factors reflecting environmental justice. Environ Health Perspect 2002;110:S23340.
59 Coburn J. Combining community based research and local knowledge to confront asthma and subsistence-fishing hazards in Greenpoint/Williamsburg, Brooklyn, New York. Environ Health Perspect 2002;110:S24148.
60 Loh P, Sugerman-Brozan J, Wiggins S, Noiles D, Archibald C. From asthma to Airbeat: community-driven monitoring of fine particles and black carbon in Roxbury, Massachusetts. Environ Health Perspect 2002;110:S297302.
61 Clements-Nolle K, Bachrach A. Community based participatory research with a hidden population: The transgender community health project. In: Minkler M and Wallerstein N (eds). Community Based Participatory Research for Health. San Francisco: Jossey-Bass, 2003, pp. 33243.
62 Jones J. Bad Blood: The Tuskegee Syphilis Experiment. New York: Free Press, 1993.
63 Moreno JD. Lessons learned a half-century of experimenting on humans. Humanist 1999;59:915.
64 Thompson SJ, Gifford SM, Thorpe L. The social and cultural context of risk and prevention: food and physical activity in an urban aboriginal community. Health Educ Behav 2000;27:72543.
65 Chen AM, Wismer BA, Lew R et al. Health is Strength: a research collaboration involving Korean Americans in Alameda County. Am J Prev Med 1997;13:93100.[ISI][Medline]
66 Newacheck PW, Halfon N. Prevalence and impact of disabling chronic conditions in childhood. Am J Public Health 1998,88:61017.[Abstract]
67 Clements-Nolle K, Marx R, Guzman R, Katz M. HIV prevalence, risk behaviors, health care use, and mental health status of transgender persons: implications for public health intervention. Am J Public Health 2001;91:91521.[Abstract]
68 Clements-Nolle, Wilkinson W, Kitano K, Marx R. HIV prevention and health service needs of the transgender community San Francisco. In: Bockting W, Kirk S (eds). Transgender and HIV: Risks, Prevention and Care. Binghampton, NY: Hayworth Press, Inc., 2001, pp. 6989.
69 Weed DL. Epidemiology, the humanities, and public health. Am J Public Health 1995;85:91418.[Abstract]
70 Little M. Assignments of meaning in epidemiology. Soc Sci Med 1998;47:113545.[CrossRef][ISI][Medline]
71 Poole C, Rothman K. Epidemiologic science and public health policy. J Clin Epidemiol 1990;43:127071.[Medline]
72 Wallack L. The California Violence Initiative: advancing policy to ban Saturday night specials. Health Educ Behav 1999;26:84157.[ISI][Medline]
73 Bradbury H , Reason P. Issues and choice points for improving the quality of action research. In: Minkler M and Wallerstein N (eds). Community Based Participatory Research for Health. San Francisco: Jossey-Bass, 2003, pp. 20120.
74 Alvarez AR, Gutierrez LM. Choosing to do participatory research: an example and issues of fit to consider. J Community Practice 2001;9:120.