Participatory epidemiology: The contribution of participatory research to epidemiology

Emerging Themes in Epidemiology

Volumn 14, Issue 1, 2017, Pages

  Bach, Mario ^a   Jordan, Susanne ^a   Hartung, Susanne ^b   Santos Hövener, Claudia ^a   Wright, Michael T ^b  

^a ROBERT KOCH INSTITUTE   (Germany)

^b Institut für Soziale Gesundheit Katholische Hochschule für Sozialwesen Berlin   (Germany)

Author keywords

Capacity building; Conceptual framework; Context; Health promotion; Methodology; Participatory epidemiology; Participatory research

Indexed keywords

CAPACITY BUILDING; CONCEPTUAL FRAMEWORK; DATA ANALYSIS; DATA COLLECTION METHOD; DATA SYNTHESIS; EPIDEMIOLOGICAL DATA; HEALTH PROMOTION; HUMAN; INTERDISCIPLINARY RESEARCH; LIFESTYLE; PARTICIPATORY RESEARCH; PUBLIC HEALTH; REVIEW; VALIDATION STUDY;

EID: 85011968262     PISSN: None     EISSN: 17427622     Source Type: Journal    
DOI: 10.1186/s12982-017-0056-4     Document Type: Review

References (112)

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.
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.
4. Stallones RA. To advance epidemiology. Annu Rev Public Health. 1980;1:69-82.
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.
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.
8. Krieger N. Epidemiology and the people's health. Theory and context. New York: Oxford University Press; 2011.
9. Galea S, Link BG. Six paths for the future of social epidemiology. Am J Epidemiol. 2013;178:843-9.
10. Krieger N. Epidemiology and the web of causation: has anyone seen the spider? Soc Sci Med. 1994;39:887-903.
11. Shy CM, Walker AM. The failure of academic epidemiology: witness for the prosecution. Am J Epidemiol. 1997;145:479-84.
12. Diez-Roux AV. Bringing context back into epidemiology: variables and fallacies in multilevel analysis. Am J Public Health. 1998;88:216-22.
13. Susser M, Susser E. Choosing a future for epidemiology: II. From black box to Chinese boxes and eco-epidemiology. Am J Public Health. 1996;86:674-7.
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.
15. Loue S, Galea S. Migration. In: Galea S, editor. Macrosicial determinants of population health. New York: Springer; 2007. p. 247-73.
16. Freudenberg N, Galea S. Corporate Practices. In: Galea S, editor. Macrosocial determinants of population health. New York: Springer; 2007. p. 71-104.
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.
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.
19. Burrage H. Epidemiology and community health: a strained connection? Soc Sci Med. 1987;25:895-903.
20. Susser M, Susser E. Choosing a future for epidemiology: I. Eras and paradigms. Am J Public Health. 1996;86:668-73.
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.
22. International Epidemiological Association. Epidemiology: still a basic science in public health? http://ieaweb.org/epidemiology-still-a-basic-science-in-public-health.
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.
24. ICPHR. Position paper 1: what is participatory health research? Version: Mai 2013. Berlin: International Collaboration for Participatory Health Research; 2013.
25. Schwab M, Syme SL. On paradigms, community participation, and the future of public health. Am J Public Health. 1997;87:2049-51.
26. Sapienza JN, Corbie-Smith G, Keim S, Fleischman AR. Community engagement in epidemiological research. Ambul Pediatr. 2007;7:247-52.
27. Brown P. When the public knows better: popular epidemiology challenges the system. Environment. 1993;35:16-41.
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.
30. Freifeld CC, Chunara R, Mekaru SR, Chan EH, Kass-Hout T, Iacucci AA, Brownstein JS. Participatory epidemiology: use of mobile phones for community-based health reporting. PLoS Med. 2010. doi: 10.1371/journal.pmed.1000376.
31. Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol Theory Pract. 2005;8:19-32.
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.
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.
35. Pawson R. Evidence-based policy: the promise of 'realist synthesis'. Evaluation. 2002;8:340-58.
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.
38. Wang C, Burris MA. Photovoice: concept, methodology, and use for participatory needs assessment. Health Educ Behav. 1997;24:369-87.
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.
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.
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.
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.
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.
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.
46. Wallerstein N. A participatory evaluation model for healthier communities: developing indicators for New Mexico. Public Health Rep. 2000;115:199-204.
47. Cameron M, Andersson N, McDowell I, Ledogar RJ. Culturally Safe epidemiology: oxymoron or scientific imperative. Pimatisiwin. 2010;8:89-116.
48. Murphy NJ. Citizen deliberation in setting health-care priorities. Health Expect. 2005;8:172-81.
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.
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.
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.
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.
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.
54. Smith MH. Community-based epidemiology: community involvement in defining social risk. J Health Soc Policy. 1998;9:51-65.
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.
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.
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.
59. Lilienfeld DE. Definitions of epidemiology. Am J Epidemiol. 1978;107:87-90.
60. Paul JR. President's address: clinical epidemiology. J Clin Investig. 1938;17:539-41.
61. Schwartz S, Susser E, Susser M. A Future for epidemiology? Annu Rev Public Health. 1999;20:15-33.
62. Gordon RR, Gellert GA. Population health looking upstream. Lancet. 1994;343:856-7.
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. Cornwall A, Jewkes R. What is participatory research? Soc Sci Med. 1995;41:1667-76.
65. An interview with Leonard Syme and others about the project can be found on youtube. http://tinyurl.com/zm6353k.
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. Little M. Assignments of meaning in epidemiology. Soc Sci Med. 1998;47:1135-45.
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.
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.
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.
74. Tuomilehto J, Puska P. The changing role and legitimate boundaries of epidemiology: community-based prevention programmes. Soc Sci Med. 1987;25:589-98.
75. Rose G. Sick individuals and sick populations. Int J Epidemiol. 2001;30:427-32.
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.
77. Weiss MG. Cultural epidemiology: an introduction and overview. Anthropol Med. 2001;8:5-29.
78. Trostle JA. Epidemiology and culture. Cambridge: Cambridge University Press; 2005.
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.
80. Yen IH, Syme SL. The social environment and health: a discussion of the epidemiologic literature. Annu Rev Public Health. 1999;20:287-308.
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.
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.
83. Bhopal R. Paradigms in epidemiology textbooks: in the footsteps on Thomas Kuhn. Am J Public Health. 1999;89:1162-5.
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.
85. Murphy K, Fafard P. Knowledge translation and social epidemiology: taking power, politics and values seriously. In: ÓCampo 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.
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.
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.
89. Kroll LE, Lampert T. Regionalisierung von Gesundheitsindikatoren: Ergebnisse aus der GEDA-Studie 2009. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2012;55:129-40.
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.
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.
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.
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.
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.
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.
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.
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.
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.
102. Razum O, Gerhardus A. Editorial: methodological triangulation in public health research - advancement or mirage? Trop Med Int Health. 1999;4:243-4.
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.
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.
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.
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.
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.
110. Weed DL, McKeown RE. Science and social responsibility in public health. Environ Health Perspect. 2003;111:1804-8.
111. Higginson J, Chu F. Ethical considerations and responsibilities in communicating health risk information. J Clin Epidemiol. 1991;44:51-6.
112. PartKommPlus. www.partkommplus.de.