Skip to main content
Key Specialties
Cardiology Diabetology Endocrinology Gastroenterology Geriatrics and Gerontology Gynecology and Obstetrics Hematology Infectious Disease Internal Medicine Nephrology Neurology Oncology Pediatrics Respiratory Medicine Rheumatology Surgery
Congress Coverage
2024 ACC Congress 2023 ESMO Congress 2023 EASD Congress 2023 ERS Congress 2023 ESC Congress
Clinical Collections
Advances in Alzheimer’s

At a glance: The STEP trials

A round-up of the STEP phase 3 clinical trials evaluating semaglutide for weight loss in people with overweight or obesity.
ADVANCED SEARCH
Log in
Top
Emerging Themes in Epidemiology
Published in: Emerging Themes in Epidemiology 1/2017

Open Access 01-12-2017 | Review

Participatory epidemiology: the contribution of participatory research to epidemiology

Authors: Mario Bach, Susanne Jordan, Susanne Hartung, Claudia Santos-Hövener, Michael T. Wright

Published in: Emerging Themes in Epidemiology | Issue 1/2017

Login to get access

Abstract

Background

Epidemiology has contributed in many ways to identifying various risk factors for disease and to promoting population health. However, there is a continuing debate about the ability of epidemiology not only to describe, but also to provide results which can be better translated into public health practice. It has been proposed that participatory research approaches be applied to epidemiology as a way to bridge this gap between description and action. A systematic account of what constitutes participatory epidemiology practice has, however, been lacking.

Methods

A scoping review was carried out focused on the question of what constitutes participatory approaches to epidemiology for the purpose of demonstrating their potential for advancing epidemiologic research. Relevant databases were searched, including both the published and non-published (grey) literature. The 102 identified sources were analyzed in terms of comparing common epidemiologic approaches to participatory counterparts regarding central aspects of the research process. Exemplary studies applying participatory approaches were examined more closely.

Results

A highly diverse, interdisciplinary body of literature was synthesized, resulting in a framework comprised of seven aspects of the research process: research goal, research question, population, context, data synthesis, research management, and dissemination of findings. The framework specifies how participatory approaches not only differ from, but also how they can enhance common approaches in epidemiology. Finally, recommendations for the further development of participatory approaches are given. These include: enhancing data collection, data analysis, and data validation; advancing capacity building for research at the local level; and developing data synthesis.

Conclusion

The proposed framework provides a basis for systematically developing the emergent science of participatory epidemiology.
Literature
1.
Breslow L, Detels R. Public health and epidemiology. In: Holland WW, Olsen J, duFlorey CV, editors. The development of modern epidemiology: personal reports from those who were there. Oxford: Oxford University Press; 2007.
2.
Trinidad SB, Ludman EJ, Hopkins S, James RD, Hoeft TJ, Kinegak A, Lupie H, Kinegak R, Boyer BB, Burke W. Community dissemination and genetic research: moving beyond results reporting. Am J Med Genet Part A. 2015;167:1542–50.PubMedPubMedCentralCrossRef
3.
Gerhardus A, Breckenkamp J, Razum O. Evidence-based Public Health. Prävention und Gesundheitsförderung im Kontext von Wissenschaft, Werten und Interessen. Med Klin. 2008;103:406–12.CrossRef
4.
5.
Wing S. Limits of epidemiology. Med Glob Surviv. 1994;1:74–86.
6.
Leung MW, Yen IH, Minkler M. Community based participatory research: a promising approach for increasing epidemiology’s relevance in the 21st century. Int J Epidemiol. 2004;33:499–506.PubMedCrossRef
7.
Syme SL. The prevention of disease and promotion of health: the need for a new approach. Eur J Pub Health. 2007;17:329–30.CrossRef
8.
Krieger N. Epidemiology and the people’s health. Theory and context. New York: Oxford University Press; 2011.CrossRef
9.
10.
Krieger N. Epidemiology and the web of causation: has anyone seen the spider? Soc Sci Med. 1994;39:887–903.PubMedCrossRef
11.
Shy CM, Walker AM. The failure of academic epidemiology: witness for the prosecution. Am J Epidemiol. 1997;145:479–84.PubMedCrossRef
12.
13.
14.
Ompad DC, Galea S, Vlahov D. Urbanicity, urbanization, and the urban environment. In: Galea S, editor. Macrosocial determinants of population health. New York: Springer; 2007. p. 53–69.CrossRef
15.
Loue S, Galea S. Migration. In: Galea S, editor. Macrosicial determinants of population health. New York: Springer; 2007. p. 247–73.CrossRef
16.
Freudenberg N, Galea S. Corporate Practices. In: Galea S, editor. Macrosocial determinants of population health. New York: Springer; 2007. p. 71–104.CrossRef
17.
Hoebel J, Starker A, Jordan S, Richter M, Lampert T. Determinants of health check attendance in adults: findings from the cross-sectional German Health Update (GEDA) study. BMC Public Health. 2014;14:913.PubMedPubMedCentralCrossRef
18.
Chowdhury PD, Emdad Haque C. Why is an integrated social–ecological systems (ISES) lens needed to explain causes and determinants of disease? A case study of dengue in Dhaka, Bangladesh. Adv Med Sociol. 2013;15:217–39.CrossRef
19.
Burrage H. Epidemiology and community health: a strained connection? Soc Sci Med. 1987;25:895–903.PubMedCrossRef
20.
21.
Gouda HN, Powles JW. The science of epidemiology and the methods needed for public health assessments: a review of epidemiology textbooks. BMC Public Health. 2014;14:139.PubMedPubMedCentralCrossRef
22.
23.
Neumeyer-Gromen A, Bräunlich A, Zeeb H, Razum O. Theorie und praxis der epidemiologie. Teil I: Systematik theoretischer grundlagen der epidemiologie als zentrale fachdisziplin von “public health”. Pravent Gesundh. 2006;1:190–7.CrossRef
24.
ICPHR. Position paper 1: what is participatory health research? Version: Mai 2013. Berlin: International Collaboration for Participatory Health Research; 2013.
25.
26.
27.
Brown P. When the public knows better: popular epidemiology challenges the system. Environment. 1993;35:16–41.CrossRef
28.
Olsen A, Banwell C. Context and environment: the value of considering lay epidemiology. In: Banwell C, Ulijaszek S, Dixon J, editors. When culture impacts health: global lessons for effective health research. London: Elsevier; 2013. p.85–93.
29.
Wing S, Grant G, Green M, Stewart C. Community based collaboration for environmental justice: south-east Halifax environmental reawakening. Environ Urban. 1996;8:129–40.CrossRef
30.
31.
Arksey H, O’Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol Theory Pract. 2005;8:19–32.CrossRef
32.
Shankardass K, Solar O, Murphy K, Greaves L, O’Campo P. A scoping review of intersectoral action for health equity involving governments. Int J Public Health. 2012;57:25–33.PubMedCrossRef
33.
Snilstveit B, Oliver S, Vojtkova M. Narrative approaches to systematic review and synthesis of evidence for international development policy and practice. J Dev Eff. 2012;4:409–29.
34.
Jagosh J, Pluye P, Wong G, Cargo M, Salsberg J, Bush PL, Herbert CP, Green LW, Greenhalgh T, Macaulay AC. Critical reflections on realist review: insights from customizing the methodology to the needs of participatory research assessment. Res Synth Methods. 2014;5:131–41.PubMedCrossRef
35.
Pawson R. Evidence-based policy: the promise of ‘realist synthesis’. Evaluation. 2002;8:340–58.CrossRef
36.
Hardy AI. Ärzte, Ingenieure und städtische Gesundheit. Medizinische Theorien in der Hygienebewegung des 19. Jahrhunderts. Frankfurt a.M.: Campus; 2005.
37.
Wilson N, Dasho S, Martin AC, Wallerstein N, Wang CC, Minkler M. Engaging young adolescents in social action through photovoice: the Youth Empowerment Strategies (YES!) Project. J Early Adolesc. 2007;27:241–61.CrossRef
38.
Wang C, Burris MA. Photovoice: concept, methodology, and use for participatory needs assessment. Health Educ Behav. 1997;24:369–87.PubMedCrossRef
39.
Claudio L, Stingone JA. Improving sampling and response rates in children’s health research through participatory methods. J Sch Health. 2008;78:445–51.PubMedCrossRef
40.
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;110:297–301.PubMedPubMedCentralCrossRef
41.
Oades LG, Law J, Marshall SL. Development of a consumer constructed scale to evaluate mental health service provision. J Eval Clin Pract. 2011;17:1102–7.PubMedCrossRef
42.
Merten S, Schaetti C, Manianga C, Lapika B, Chaignat CL, Hutubessy R, Weiss MG. Local perceptions of cholera and anticipated vaccine acceptance in Katanga Province, Democratic Republic of Congo. BMC Public Health. 2013;13:60.PubMedPubMedCentralCrossRef
43.
Maar MA, Lightfoot NE, Sutherland ME, Strasser RP, Wilson KJ, Lidstone-Jones CM, Graham DG, Beaudin R, Daybutch GA, Dokis BR, et al. Thinking outside the box: aboriginal people’s suggestions for conducting health studies with aboriginal communities. Public Health. 2011;125:747–53.PubMedCrossRef
44.
Brown ER, Holtby S, Zahnd E, Abbott GB. Community-based participatory research in the California Health Interview Survey. Prev Chronic Dis. 2005;2:1–8.
45.
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;27:725–43.PubMedCrossRef
46.
Wallerstein N. A participatory evaluation model for healthier communities: developing indicators for New Mexico. Public Health Rep. 2000;115:199–204.PubMedPubMedCentralCrossRef
47.
Cameron M, Andersson N, McDowell I, Ledogar RJ. Culturally Safe epidemiology: oxymoron or scientific imperative. Pimatisiwin. 2010;8:89–116.PubMedPubMedCentral
48.
49.
Santos-Hövener C, Marcus U, Koschollek C, Oudini H, Wiebe M, Ouedraogo OI, Thorlie A, Bremer V, Hamouda O, Dierks ML, et al. Determinants of HIV, viral hepatitis and STI prevention needs among African migrants in Germany; a cross-sectional survey on knowledge, attitudes, behaviors and practices. BMC Public Health. 2015;15:735.CrossRef
50.
Forrest JI, Stevenson B, Rich A, Michelow W, Pai J, Jollimore J, Raymond HF, Moore D, Hogg RS, Roth EA. Community mapping and respondent-driven sampling of gay and bisexual men’s communities in Vancouver, Canada. Cult Health Sex. 2014;16:288–301.CrossRef
51.
Aronson RE, Wallis AB, O’Campo PJ, Schafer P. Neighborhood mapping and evaluation: a methodology for participatory community health initiatives. Matern Child Health J. 2007;11:373–83.PubMedCrossRef
52.
Voigtländer S, Berger U, Razum O. The impact of regional and neighbourhood deprivation on physical health in Germany: a multilevel study. BMC Public Health. 2010;10:403.PubMedPubMedCentralCrossRef
53.
Ansumana R, Malanoski AP, Bockarie AS, Sundufu AJ, Jimmy DH, Bangura U, Jacobsen KH, Lin B, Stenger DA. Enabling methods for community health mapping in developing countries. Int J Health Geogr. 2010;9:56.PubMedPubMedCentralCrossRef
54.
Smith MH. Community-based epidemiology: community involvement in defining social risk. J Health Soc Policy. 1998;9:51–65.PubMedCrossRef
55.
Smith A, Christopher S, McCormick AKHG. Development and implementation of a culturally sensitive cervical health survey: a community-based participatory approach. Women Health. 2004;40:67–86.PubMedCrossRef
56.
Goldsmith Cwikel J. After epidemiological research: what next? Community action for health promotion. Public Health Rev. 1994;22:375–94.
57.
Sandman PM. Emerging communication responsibilities of epidemiologists. J Clin Epidemiol. 1991;44:41–50.CrossRef
58.
McDavitt B, Bogart LM, Mutchler MG, Wagner GJ, Green HD Jr, Lawrence SJ, Mutepfa KD, Nogg KA. Dissemination as dialogue: building trust and sharing research findings through community engagement. Prev Chronic Dis. 2016;13:E38.PubMedPubMedCentralCrossRef
59.
Lilienfeld DE. Definitions of epidemiology. Am J Epidemiol. 1978;107:87–90.PubMed
60.
61.
Schwartz S, Susser E, Susser M. A Future for epidemiology? Annu Rev Public Health. 1999;20:15–33.PubMedCrossRef
62.
63.
Schulte PA, Rothman N, Hainaut P, Smith MT, Boffetta P, Perera FP. Molecular epidemiology: linking molecular scale insights to population impacts. IARC Sci Publ. 2011;163:1–7.
64.
65.
66.
Brice P, Zimmern R. The public health genomic enterprise. In: Khoury MJ, Bedrosian SR, Gwinn M, Higgins JT, Ioannidis JP, Little J, editors. Human genome epidemiology building the evidence for using genetic information to improve health and prevent disease. Oxford: Oxford University Press; 2010.
67.
68.
Krieger N. Social inequalities in health. In: Olsen J, Saracci R, Trichopoulos D, editors. Teaching epidemiology. Oxford: Oxford University Press; 2010.
69.
Fleischer NL, Weber AM, Gruber S, Arambula KZ, Mascarenhas M, Frasure JA, Wang C, Syme SL. Pathways to health: a framework for health-focused research and practice. Emerg Themes Epidemiol. 2006;3:18.PubMedPubMedCentralCrossRef
70.
Wright MT, Block M, Unger H. Partizipative Qualitätsentwicklung. In: Kolip P, Müller VE, editors. Qualität von Gesundheitsförderung und Prävention. Bern: Hans Huber; 2009. p. 157–75.
71.
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;109:863–9.PubMedPubMedCentralCrossRef
72.
ICPHR. Position paper 2: participatory health research: a guide to ethical principals and practice. Version: October 2013. Berlin: International Collaboration for Participatory Health Research; 2013.
73.
Cacari-Stone L, Wallerstein N, Garcia AP, Minkler M. The promise of community-based participatory research for health equity: a conceptual model for bridging evidence with policy. Am J Public Health. 2014;104:1615–23.PubMedPubMedCentralCrossRef
74.
Tuomilehto J, Puska P. The changing role and legitimate boundaries of epidemiology: community-based prevention programmes. Soc Sci Med. 1987;25:589–98.PubMedCrossRef
75.
76.
Krieger N. Who and what is a “population”? Historical debates, current controversies, and implications for understanding “population health” and rectifying health inequities. Milbank Q. 2012;90:634–81.PubMedPubMedCentralCrossRef
77.
Weiss MG. Cultural epidemiology: an introduction and overview. Anthropol Med. 2001;8:5–29.CrossRef
78.
Trostle JA. Epidemiology and culture. Cambridge: Cambridge University Press; 2005.CrossRef
79.
Wallerstein NB, Yen IH, Syme SL. Integration of social epidemiology and community-engaged interventions to improve health equity. Am J Public Health. 2011;101:822–30.PubMedPubMedCentralCrossRef
80.
Yen IH, Syme SL. The social environment and health: a discussion of the epidemiologic literature. Annu Rev Public Health. 1999;20:287–308.PubMedCrossRef
81.
Khoury MJ, Coates RJ, Fennell ML, Glasgow RE, Scheuner MT, Schully SD, Williams MS, Clauser SB. Multilevel research and the challenges of implementing genomic medicine. J Natl Cancer Inst Monogr. 2012;2012:112–20.PubMedPubMedCentralCrossRef
82.
Andrews ML, Sanchez V, Carrillo C, Allen-Ananins B, Cruz YB. Using a participatory evaluation design to create an online data collection and monitoring system for New Mexico’s Community Health Councils. Eval Program Plan. 2014;42:32–42.CrossRef
83.
84.
Susser M. What is a cause and how do we know one? A grammar for pragmatic epidemiology. Am J Epidemiol. 1991;133:635–48.PubMed
85.
Murphy K, Fafard P. Knowledge translation and social epidemiology: taking power, politics and values seriously. In: O´Campo P, Dunn JR, editors. Rethinking social epidemiology: towards a science of change. New York: Springer; 2012. p. 267–283.
86.
de Leeuw E, McNess A, Crisp B, Stagnitti K. Theoretical reflections on the nexus between research, policy and practice. Crit Public Health. 2008;18:5–20.CrossRef
87.
Jagosh J, MacAulay AC, Pluye P, Salsberg J, Bush PL, Henderson J, Sirett E, Wong G, Cargo M, Herbert CP, et al. Uncovering the benefits of participatory research: implications of a realist review for health research and practice. Milbank Q. 2012;90:311–46.PubMedPubMedCentralCrossRef
88.
Gold M, Dodd AH, Neuman M. Availability of data to measure disparities in leading health indicators at the state and local levels. J Public Health Manag Pract (JPHMP). 2008;14:S36–44.CrossRef
89.
Kroll LE, Lampert T. Regionalisierung von Gesundheitsindikatoren: Ergebnisse aus der GEDA-Studie 2009. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2012;55:129–40.PubMedCrossRef
90.
Van Bon-Martens MJH, Achterberg PW, Van De Goor IAM, Van Oers HAM. Towards quality criteria for regional public health reporting: concept mapping with Dutch experts. Eur J Public Health. 2012;22:337–42.PubMedCrossRef
91.
Bachinger E, Gerlinde G. Capacity Building für Gesundheitsberichterstattung. In: Kuhn J, Böcken J, editors. Verwaltete Gesundheit Konzepte der Gesundheitsberichterstattung in der Diskussion. Frankfurt a.M.: Mabuse-Verlag; 2009.
92.
Rütten A, Abu-Omar K, Levin L, Morgan A, Groce N, Stuart J. Research note: social catalysts in health promotion implementation. J Epidemiol Community Health. 2008;62:560–5.PubMedCrossRef
93.
Mitchell SM, Shortell SM. The governance and management of effective community health partnerships: a typology for research, policy, and practice. Milbank Q. 2000;78:241–89.PubMedPubMedCentralCrossRef
94.
Kendall E, Muenchberger H, Sunderland N, Harris M, Cowan D. Collaborative capacity building in complex community-based health partnerships: a model for translating knowledge into action. J Public Health Manag Pract. 2012;18:E1–13.PubMedCrossRef
95.
Israel BA, Krieger J, Vlahov D, Ciske S, Foley M, Fortin P, Guzman JR, Lichtenstein R, McGranaghan R, Palermo AG, Tang G. Challenges and facilitating factors in sustaining community-based participatory research partnerships: lessons learned from the Detroit, New York City and Seattle urban research centers. J Urban Health Bull NY Acad Med. 2006;83:1022–40.CrossRef
96.
Taylor Bishop Scott J, Abraczinskas M, Johnson VA, Cook JR, Kilmer RP, Daniels EN. Building capacity in child welfare to screen for mental health challenges: lessons learned. Prog Community Health Partnersh Res Educ Action. 2014;8:187–95.CrossRef
97.
Diver SW, Higgins MN. Giving back through collaborative research: towards a practice of dynamic reciprocity. J Res Pract. 2014;10:M9.
98.
Morse J. Mixed method design: principles and procedures. Walnut Creek: Left Coast Press; 2009.
99.
Karbach U, Stamer M, Holmberg C, Güthlin C, Patzelt C, Meyer T. Qualitative research in health services research—discussion paper, part 2: qualitative research in health services research in Germany—an overview. Gesundheitswesen. 2012;74:516–25.PubMedCrossRef
100.
Ismail MM, Gerrish K, Naisby A, Salway S, Chowbey P. Engaging minorities in researching sensitive health topics by using a participatory approach. Nurse Res. 2014;22:44–8.PubMedCrossRef
101.
Draper AK, Hewitt G, Rifkin S. Chasing the dragon: developing indicators for the assessment of community participation in health programmes. Soc Sci Med. 2010;71:1102–9.PubMedCrossRef
102.
Razum O, Gerhardus A. Editorial: methodological triangulation in public health research—advancement or mirage? Trop Med Int Health. 1999;4:243–4.PubMedCrossRef
103.
Rutherford GW, McFarland W, Spindler H, White K, Patel SV, Aberle-Grasse J, Sabin K, Smith N, Taché S, Calleja-Garcia JM, Stoneburner RL. Public health triangulation: approach and application to synthesizing data to understand national and local HIV epidemics. BMC Public Health. 2010;10:477.CrossRef
104.
Pluye P, Hong QN. Combining the power of stories and the power of numbers: mixed methods research and mixed studies reviews. Annu Rev Public Health. 2014;35:29–45.PubMedCrossRef
105.
Pawson R, Greenhalgh T, Harvey G, Walshe K. Realist review—a new method of systematic review designed for complex policy interventions. J Health Serv Res Policy. 2005;10:21–34.PubMedCrossRef
106.
Denzin NK. Sociological methods: a sourcebook. Chicago: Aldine Transaction; 1970.
107.
Stephens C. Participation in different fields of practice: using social theory to understand participation in community health promotion. J Health Psychol. 2007;12:949–60.PubMedCrossRef
108.
Porta M. A dictionary of epidemiology. Oxford: Oxford University Press; 2008.
109.
Rychetnik L, Frommer M, Hawe P, Shiell A. Criteria for evaluating evidence on public health interventions. J Epidemiol Community Health. 2002;56:119–27.PubMedPubMedCentralCrossRef
110.
111.
Higginson J, Chu F. Ethical considerations and responsibilities in communicating health risk information. J Clin Epidemiol. 1991;44:51–6.CrossRef
112.
Metadata
Title
Participatory epidemiology: the contribution of participatory research to epidemiology
Authors
Mario Bach
Susanne Jordan
Susanne Hartung
Claudia Santos-Hövener
Michael T. Wright
Publication date
01-12-2017
Publisher
BioMed Central
Published in
Emerging Themes in Epidemiology / Issue 1/2017
Electronic ISSN: 1742-7622
DOI
https://doi.org/10.1186/s12982-017-0056-4

Other articles of this Issue 1/2017

Emerging Themes in Epidemiology 1/2017 Go to the issue

Analytic Perspective

Model checking in multiple imputation: an overview and case study

Analytic perspective

Randomised and non-randomised studies to estimate the effect of community-level public health interventions: definitions and methodological considerations

Research article

Do children with neurological disabilities use more inpatient resources: an observational study

Research article

Exploring diurnal variation using piecewise linear splines: an example using blood pressure

Research article

Estimating the prevalence of dementia using multiple linked administrative health records and capture–recapture methodology

Analytic perspective

On hazard ratio estimators by proportional hazards models in matched-pair cohort studies