Community-based research decision-making: Experiences and factors affecting participation

Vivien Runnels, Caroline Andrew


Abstract

From the post World War II period through to the present, scientific research and policy has increasingly reflected acceptance and implementation of a view that public interests are better served through public participation. Built on principles of democratic participation, community-based research (CBR) can produce new knowledge through the integration of knowledge of community members’ lived experience with the scientific and technical knowledge of academics. Although community-based research has experienced considerable recent attention as an approach to knowledge production, a specific focus on the participation of community members in decision-making or governance of CBR is sparse. To assist in understanding governance of CBR in Canada and the nature and extent of public participation, we conducted an interview-based qualitative study with 54 respondents. Arnstein’s (1969) theory of participation was used as the theoretical orientation. Respondents’ experiences showed their participation in governance was generally organised through four groups of factors that modified participation: pre-existing conditions, arrangements of governance, actions of academic actors, and actions of community actors. Although community members’ participation in governance was largely contingent on the arrangements, structures and actions controlled or formulated by academics, and despite their relatively limited access to and engagement with real decision-making power, in general community members’ participation was satisfactory to them. However, the highest level of participation that Arnstein envisaged was rarely attained. Awareness of theory and practice of participation in research decision-making can help research decision-makers put in place the conditions and means for realising democratic goals and knowledge co-production.

Keywords: governance, decision-making, community-based research, public participation, Arnstein

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References

Ansell, C & Gash, A 2008, 'Collaborative governance in theory and practice', Journal of Public Administration Research and Theory, vol. 18, no. 4, pp. 543–71. http://dx.doi.org/10.1093/jopart/mum032

Arnstein, S 1969, 'A ladder of citizen participation', Journal of the American Planning Association, vol. 35, no. 4, pp. 216–24.

Barrington Research Group 2004, Community-University Research Alliances (CURA) program: Analysis of data contained within the Milestone and Year 1 Reports, Social Sciences and Humanities Research Council, Ottawa, Canada.

Beyrer, C & Kass, N 2002, 'Human rights, politics, and reviews of research ethics', The Lancet, vol. 360, no. 9328, pp. 246–51. http://dx.doi.org/10.1016/S0140-6736(02)09465-5

Brown, E, Holtby, S, Zahnd, E & Abbott, G 2005, 'Community-based participatory research in the California Health Interview Survey', Preventing Chronic Disease: Public Health Research, Practice and Policy, vol. 2, no. 4, pp. 1–8e.

Callon, M 1999, 'The role of lay people in the production and dissemination of scientific knowledge', Science, Technology and Society, vol. 4, no. 1, pp. 81–94. http://dx.doi.org/10.1177/097172189900400106

Cargo, M & Mercer, S 2008, 'The value and challenges of participatory research: Strengthening its practice', Annual Review of Public Health, vol. 29, pp. 325–50. http://dx.doi.org/10.1146/annurev.publhealth.29.091307.083824

Centers for Disease Control and Prevention 2008, U.S. Public Health Service Syphilis Study at Tuskegee, viewed 4 September 2013, www.cdc.gov/tuskegee/.

Charmaz, K 2006, Constructing grounded theory: A practical guide through qualitative analysis, Sage, London.

Charmaz, K 2009, 'Shifting the grounds: Constructivist grounded theory methods', in J Morse, P Noerager Stern, J Corbin, B Bowers, K Charmaz & A Clarke (eds), Developing grounded theory: The second generation, Left Coast Press Inc, Walnut Creek, CA, pp. 127–54.

Chrislip, D & Larson C 1994, Collaborative leadership: How citizens and civic leaders can make a difference, Jossey-Bass, San Francisco.

Cornwall, A 1996, 'Towards participatory practice: Participatory rural appraisal and the participatory process', in K de Koning & M Martin (eds), Participatory research in health: Issues and experiences, Zed Books, London.

Cornwall, A 2008, 'Unpacking participation" models' meanings and practices', Community Development Journal, vol. 43, no. 3, pp. 269–83." http://dx.doi.org/10.1093/cdj/bsn010

Cornwall, A & Jewkes, R 1995, 'What is participatory research?', Social Science & Medicine, vol. 41, no. 12, pp. 1667–76. http://dx.doi.org/10.1016/0277-9536(95)00127-S

Dietz, T & Stern, P 2008, Public participation in environmental assessment and decision making, National Academies Press, Washington, DC.

Flinders, M 2002, 'Governance in Whitehall', Public Administration, vol. 80, no. 1, pp. 51–75. http://dx.doi.org/10.1111/1467-9299.00294

Fung, A 2006, 'Varieties of participation in complex governance', Public Administration Review, vol. 66, no. 1, suppl., pp. 66–75s. http://dx.doi.org/10.1111/j.1540-6210.2006.00667.x

Fung, A 2007, 'Democratic theory and political science: A pragmatic method of constructive engagement', American Political Science Review, vol. 101, no. 3, pp. 443–58. http://dx.doi.org/10.1017/S000305540707030X

Gibbons, M, Limoges, C, Nowotny, H, Schwartzman, S, Scott, P & Trow, M 1994, The new production of knowledge: The dynamics of science and research in contemporary societies, Sage, London.

Gray, B 1989, Collaborating: Finding common ground for multiparty problems, Jossey-Bass, San Francisco, CA.

Green, L, George, M, Daniel, M, Frankish, C, Herbert, C, Bowie, W & O'Neil, M 1995, Study of participatory research in health promotion: Review and recommendations for the development of participatory research in health promotion in Canada, Royal Society of Canada, Ottawa, Canada.

Gustafsson, U & Driver, S 2005, 'Parents, power and public participation: Sure Start, an experiment in New Labour governance', Social Policy & Administration, vol. 39, no. 5, pp. 528–43. http://dx.doi.org/10.1111/j.1467-9515.2005.00454.x

Hall, B, Tremblay, C & Downing, R 2009, The funding and development of community university research partnerships in Canada: Evidence-based investment in knowledge, engaged scholarship, innovation and action for Canada's future, Office of Community-Based Research, University of Victoria, Victoria, Canada.

Hatch, J, Moss, N, Saran, A, Presley-Cantrell, L & Mallory, C 1993, 'Community research: Partnership in black communities', American Journal of Preventive Medicine, vol. 9, no. 6, suppl., pp. 27–34s.

Horowitz, C, Robinson, M & Seifer, S 2009, 'Community-based participatory research from the margin to the mainstream: Are researchers prepared?', Circulation, vol. 119, no. 19, pp. 2633–42. http://dx.doi.org/10.1161/CIRCULATIONAHA.107.729863

Ibá-ez-Carrasco, F & Ria-o-Alcalá, P 2011, 'Organizing community-based research knowledge between universities and communities: Lessons learned', Community Development Journal, vol. 46, no. 1, pp. 72–88.

Irwin, A & Wynne, B 1996, Misunderstanding science? The public reconstruction of science and technology, Cambridge University Press, Cambridge. http://dx.doi.org/10.1017/CBO9780511563737

Israel, B, Schulz, A, Parker, E & Becker, A 1998, 'Review of community-based research: Assessing partnership approaches to improve public health', Annual Review of Public Health, vol. 19, no. 1, pp. 173–202. http://dx.doi.org/10.1146/annurev.publhealth.19.1.173

Israel, B, Schulz, A, Parker, E, Becker, A, Allen III, A & Guzman, J 2003, 'Critical issues in developing and following community-based participatory research principles', in M Minkler & N Wallerstein (eds), Community-based participatory research for health, Jossey-Bass, San Francisco, pp. 53–76.

Jasanoff, S 2007, 'Technologies of humility', Nature, vol. 450, p.33. http://dx.doi.org/10.1038/450033a

Kaufmann D, Kraay A & Zoido-Lobatón P 2000, 'Governance matters: From measurement to action', Finance and Development, vol. 37, no. 2, pp. 10–13.

Koné, A, Sullivan, M, Senturia, K, Chrisman, N, Ciske, S & Krieger, J 2000, 'Improving collaboration between researchers and communities', Public Health Reports, vol. 115, nos 2–3, pp. 243–48. http://dx.doi.org/10.1093/phr/115.2.243

Lantz, P, Israel, B, Schulz, A & Reyes, A 2006, 'Community-based participatory research: Rationale and relevance for social epidemiology', in J Oakes & J Kaufman (eds), Methods in social epidemiology, Jossey-Bass, San Francisco, CA, pp. 239–66.

Mattessich, P, Murray-Close, M & Monsey, B 2004, Collaboration: What makes it work. A review of the research literature on factors influencing successful collaboration, 2nd edn (Featuring: The Wilder Collaboration Factors Inventory), Amherst H Wilder Foundation, St Paul, MN.

Minkler, M 2004, 'Ethical challenges for the Outside" researcher in community based participatory research', Health Education & Behavior, vol. 31, no. 6, pp. 684–97." http://dx.doi.org/10.1177/1090198104269566

Minkler, M & Wallerstein, N 2008, Community-based participatory research for health: From process to outcomes, 2nd edn, Jossey-Bass, San Francisco, CA.

Mykhalovskiy, E & McCoy, L 2002, 'Troubling ruling discourses of health: Using institutional ethnography in community-based research', Critical Public Health, vol. 12, no.1, pp. 17–37. http://dx.doi.org/10.1080/09581590110113286

Myser, C 2004, 'Community-based participatory research in United States bioethics: Steps toward more democratic theory and policy', American Journal of Bioethics, vol. 4, no. 2, pp. 67–68. http://dx.doi.org/10.1162/152651604323097899

Oberly, J & Macedo, J 2004, 'The R word in Indian country: Culturally appropriate commercial tobacco-use research strategies', Health Promotion Practice, vol. 5, no. 4, pp. 355–61. http://dx.doi.org/10.1177/1524839904267391

O'Fallon, L & Dearry, A 2002, 'Community-based participatory research as a tool to advance environmental health sciences', Environmental Health Perspectives, vol. 110, suppl. 2, pp. 155–59s. http://dx.doi.org/10.1289/ehp.02110s2155

Pretty, J 1995, 'Participatory learning for sustainable agriculture', World Development, vol. 23, no. 8, pp. 1247–63. http://dx.doi.org/10.1016/0305-750X(95)00046-F

Provan, K & Kenis, P 2008, 'Modes of network governance: Structure, management, and effectiveness', Journal of Public Administration Research and Theory, vol. 18, no. 2, pp. 229–52. http://dx.doi.org/10.1093/jopart/mum015

Provan, K, Nakama, L, Veazie, M, Teufel-Shone, N & Huddleston, C 2003, 'Building community capacity around chronic disease services through a collaborative interorganizational network', Health Education & Behavior, vol. 30, no. 6, pp. 646–62. http://dx.doi.org/10.1177/1090198103255366

Ravetz, J 1971, Scientific knowledge and its social problems, Oxford University Press, New York.

Sandelowski, M 1998, 'Writing a good read: Strategies for re-presenting qualitative data', Research in Nursing & Health, vol. 21, no. 4, pp. 375–82.

Sandelowski, M 2000, 'Focus on research methods: Whatever happened to qualitative description?', Research in Nursing and Health, vol. 23, no. 4, pp. 334–40. http://dx.doi.org/10.1002/1098-240X(200008)23:4 & lt;334::AID-NUR9 & gt;3.0.CO;2-G

Sloat, A 2003, 'The preparation of the governance White Paper', Politics, vol. 23, no. 2, pp.128–36. http://dx.doi.org/10.1111/1467-9256.00188

Smith, L 1999, Decolonizing methodologies: Research and Indigenous peoples, Zed Books, London.

Stoecker, R 2009, 'Are we talking the walk of community-based research?' Action Research, vol. 7, pp. 385–404. http://dx.doi.org/10.1177/1476750309340944

Stoker, G 1998, 'Governance as theory: Five propositions', International Social Science Journal, vol. 50, no. 155, pp. 17–28. http://dx.doi.org/10.1111/1468-2451.00106

Williams, A, Labonte, R, Randall, J & Muhajarine, N 2005, 'Establishing and sustaining community and university partnerships: A case study of quality of life research', Critical Public Health, vol. 15, no. 3, pp. 291–302. http://dx.doi.org/10.1080/09581590500372451

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