Advertisement

“Home Thoughts from Abroad”: Reflections on the History of Participatory Health Research in the UK

  • Jane Springett
Chapter

Abstract

This chapter presents an overview of some of the influences on the development of PHR in the four nations of the UK in the context of the changing political and economic landscape of the late twentieth and early twenty-first century. Four of the strands that have informed PHR have been the overseas development tradition, community development, teacher education action research and the work of Peter Reason in Management Science. A strong impetus to development within health came from the healthy cities and health promotion movements of the 1980s and 1990s which were further encouraged by the public and patient engagement initiative with the NHS in the early 2000s. More recently the trend towards public engagement by universities and the need to demonstrate research impact have provided a further challenge as well as an opportunity for this type of research to demonstrate its benefits. However, the tension between top-down bureaucracy and grassroots ownership and control inherent in PHR continues to play out in the broader political landscape.

Keywords

History Participatory action research UK Community development Health promotion Public engagement 

References

  1. Abdulkadir, A., et al. (2016). What do you mean I have a right to health ? Participatory action research on health and human rights. Glasgow: University of Strathclyde.Google Scholar
  2. Aldridge, J. (2015). Participatory research: Working with vulnerable groups in research and practice. Bristol: Policy Press.Google Scholar
  3. Balogh, R., McAteer, M., & Hanley, U. (2017). Maintaining a network of critical connections over time and space: The case of CARN the collaborative action research network. In: Rowell, L., Bruce, C., Shosh J M, Riel M (eds) The Palgrave international handbook of action research 403–418 Springer, New York.CrossRefGoogle Scholar
  4. Baxter, L., Thorne, L., & Mitchell, A. (2001). Small voices big noises. Lay involvement in health research: Lessons from other fields. Exeter: Washinton Singer Press.Google Scholar
  5. Bennett, F., & Roberts, M. (2004). From input to influence: Participatory approaches to research and inquiry into poverty. York: Joseph Rowntree Foundation.Google Scholar
  6. Bennett, H. (2017). Fife collaborative action research programme: An overview of the process. What works Scotland research report. Edinburgh.Google Scholar
  7. Beresford, P. (2002). User involvement in research and evaluation: Liberation or regulation? Social Policy and Society, 1(2), 95–106.CrossRefGoogle Scholar
  8. Beresford, P. (2003). It's our lives: A short theory of knowledge distance and experience. London: OSP for Citizen Press.Google Scholar
  9. Beresford, P. (2005). Developing the theoretical basis for service user/survivor-led research and equal involvement in research. Epidemiologia e Psichiatria Sociale, 14(1), 4–9.CrossRefPubMedCentralGoogle Scholar
  10. Berkeley, D., & Springett, J. (2006). From rhetoric to reality: Barriers faced by health for all initiatives. Social Science and Medicine, 63(1), 179–188.CrossRefPubMedCentralGoogle Scholar
  11. Blencowe, C., Brigstocke, J., & Noorani, T. (2015). Theorising participatory practice and alienation in health research: A materialist approach. Social Theory and Health, 13(3–4), 397–417.CrossRefGoogle Scholar
  12. Boote, J., Baird, W., & Beecroft, C. (2010). Public involvement at the design stage of primary health research: A narrative review of case examples. Health Policy, 95(1), 10–23.CrossRefPubMedCentralGoogle Scholar
  13. Boote, J., Baird, W., & Sutton, A. (2011). Public involvement in the systematic review process in health and social care: A narrative review of case examples. Health Policy, 102(2), 105–116.CrossRefPubMedCentralGoogle Scholar
  14. Boote, J., Telford, R., & Cooper, C. (2002). Consumer involvement in health research: A review and research agenda. Health Policy, 61(2), 213–236.CrossRefPubMedCentralGoogle Scholar
  15. Boote, J., Wong, R., & Booth, A. (2015). Talking the talk or walking the walk? a bibliometric review of the literature on public involvement in health research published between 1995 and 2009. Health Expectations, 18(1), 44–57.CrossRefPubMedCentralGoogle Scholar
  16. Bowen, S., & Graham, I. (2013). Integrated knowledge translation. In S. Straus, J. Tetroe, & I. Graham (Eds.), Knowledge translation in health care: Moving from evidence to practice (2nd ed., pp. 14–23). London: BMJ Books.CrossRefGoogle Scholar
  17. Bradbury, H., & Reason, P. (2008). The Sage handbook of action research: Participative inquiry and practice. London: Sage Publications.Google Scholar
  18. Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C., & Suleman, R. (2014). Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations, 17(5), 637–650.CrossRefPubMedCentralGoogle Scholar
  19. Burns, D. (2007). Systemic action research: A strategy for whole system change. Bristol: Policy Press.CrossRefGoogle Scholar
  20. Burns, D., & Squires, H. (2011). Embedding public engagement in higher education: Final report of the national action research programme, NCCPE (https://www.publicengagement.ac.uk/sites/default/files/publication/action_research_report_0.pdf)
  21. Callaghan, G., & Wistow, G. (2006). Governance and public involvement in the British national health service: Understanding difficulties and developments. Social Science and Medicine, 63(9), 2289–2300.CrossRefPubMedCentralGoogle Scholar
  22. Cawston, P. G., Mercer, S. W., & Barbour, R. S. (2007). Involving deprived communities in improving the quality of primary care services: Does participatory action research work? BMC Health Services Research, 7, 88.CrossRefPubMedCentralGoogle Scholar
  23. Chambers, R. (1997). Whose reality counts? : Putting the first last. London: Intermediate Technology.CrossRefGoogle Scholar
  24. Chambers, R. (1998). Beyond “whose reality counts?” new methods we now need? Studies in Cultures Organizations and Societies, 4(2), 279–301.CrossRefGoogle Scholar
  25. Chambers, R. (2015). PRAPLA and pluralisms: Practice and theory. In H. Bradbury (Ed.), The SAGE handbook of action research (3rd ed., pp. 31–46). London: Sage.CrossRefGoogle Scholar
  26. Chiu, L. (2007). Health promotion and participatory action research: The significance of participatory praxis in developing participatory health intervention. In H. Bradbury & P. Reason (Eds.), Handbook of action research: Participative inquiry and practice (pp. 534–549). London: Sage.Google Scholar
  27. Cole, M. (2003). The health action zone initiative: Lessons from Plymouth. Local Government Studies, 29(3), 99–117.CrossRefGoogle Scholar
  28. Cook, T. (2013). Where participatory approaches meet pragmatism in funded (health) research: The challenge of finding meaningful spaces. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research 13.Google Scholar
  29. Cook, T., Boote, J., Buckley, N., Vougioukalou, S., & Wright, M. (2017). Accessing participatory research impact and legacy: Developing the evidence base for participatory approaches in health research. Educational Action Research, 25(4), 473–488.CrossRefGoogle Scholar
  30. Cornwall, A., & Jewkes, R. (1995). What is participatory research? Social Science and Medicine, 41(12), 1667–1676.CrossRefPubMedCentralGoogle Scholar
  31. Craig, G. (2016). Community development in the UK: Whatever happened to class? A historical analysis class inequality and community development. In M. Shaw & M. Mayo (Eds.), Class, inequality and commuity development (pp. 39–51). Bristol: Policy Press.CrossRefGoogle Scholar
  32. Craig, G., Mayo, M., Popple, K., Shaw, M., & Taylor, M. (2011). The community development reader: History themes and issues. Bristol: Policy Press.Google Scholar
  33. Crawshaw, P., Bunton, R., & Conway, S. (2004). Governing the unhealthy community: Some reflections on UK health action zones. Social Theory and Health, 2(4), 341–360.CrossRefGoogle Scholar
  34. Cropper, S., Porter, A., Williams, G., Carlisle, S., Moore, R., O’Neill, M., Roberts, C., Snooks H. (eds). (2007). Community health and wellbeing: Action research on health inequalities. Bristol: Policy PressGoogle Scholar
  35. Davies, J. K., & Kelly, M. (2014). Healthy cities: Research and practice. London: Routledge.CrossRefGoogle Scholar
  36. De Koning, K., & Martin, M. (1996). Participatory research in health. London: Zed Books.Google Scholar
  37. Devisch, I., & Murray, S. J. (2009). ‘We hold these truths to be self-evident’: Deconstructing ‘evidence-based’medical practice. Journal of Evaluation in Clinical Practice, 15(6), 950–954.CrossRefPubMedCentralGoogle Scholar
  38. Dooris, M., & Heritage, Z. (2013). Healthy cities: Facilitating the active participation and empowerment of local people. Journal of Urban Health, 90(1), 74–91.CrossRefPubMedCentralGoogle Scholar
  39. Evans, D., Coad, J., Cottrell, K., Dalrymple, J., Davies, R., &Donald, C., … Sayers R. (2014). Public involvement in research: Assessing impact through a realist evaluation. Health Services and Delivery Research NIHR Library 236.Google Scholar
  40. Gilbert, T. (2004). Involving people with learningdisabilities in research: Issues and possibilities. Health and Social Care in the Community, 12(4), 298–308.CrossRefPubMedCentralGoogle Scholar
  41. Gillard, S., Turner, K., Lovell, K., Norton, K., Clarke, T., Addicott, R., & Ferlie, E. (2010). “Staying native”: Coproduction in mental health services research. International Journal of Public Sector Management, 23(6), 567–577.CrossRefGoogle Scholar
  42. Goodyear-Smith, F., Jackson, C., & Greenhalgh, T. (2015). Co-design and implementation research: Challenges and solutions for ethics committees. BMC Medical Ethics, 16, 78.CrossRefPubMedCentralGoogle Scholar
  43. Green, J., & Tones, K. (1999). For debate towards a secure evidence base for health promotion. Journal of Public Health, 21(2), 133–139.CrossRefGoogle Scholar
  44. Greenhalgh, T., Jackson, C., Shaw, S., & Janamian, T. (2016). Achieving research impact through co-creation in community-based health services: Literature review and case study. The Milbank Quarterly, 94(2), 392–429.CrossRefPubMedCentralGoogle Scholar
  45. Hammersley, M. (2005). Is the evidence-based practice movement doing more good than harm? Reflections on Iain Chalmers’case for research-based policy making and practice. Evidence and Policy, 1(1), 85–100.CrossRefGoogle Scholar
  46. Harrison, S. (2002). New labour modernisation and the medical labour process. Journal of Social Policy, 31(03), 465–485.CrossRefGoogle Scholar
  47. Harrison, S., Moran, M., & Wood, B. (2002). Policy emergence and policy convergence: The case of ‘scientific-bureaucratic medicine’in the United States and United Kingdom. The British Journal of Politics and International Relations, 4(1), 1–24.CrossRefGoogle Scholar
  48. Department of Health. (1999). Reducing health inequalities: An action report. London: DH.Google Scholar
  49. Holland, S., Renold, E., Ross, N. J., & Hillman, A. (2010). Power agency and participatory agendas: A critical exploration of young people’s engagement in participative qualitative research. Childhood, 17(3), 360–375.CrossRefGoogle Scholar
  50. Hynes, G., Coghlan, D., & McCarron, M. (2012). Participation as a multi-voiced process: Action research in the acute hospital environment. Action Research, 10(3), 293–312.CrossRefGoogle Scholar
  51. INVOLVE (2014). Evidence Bibliography 5. http://www.invo.org.uk/wp-content/uploads/2014/11/Bibliography5FinalComplete.pdf. Accessed 4 Jan 2018.
  52. Jolly, R. (2008). A short history of IDS: A personal reflection. Brighton: Institute of Development Studies at the University of Sussex.Google Scholar
  53. Jordan, S., & Kapoor, D. (2016). Re-politicizing participatory action research: Unmasking neoliberalism and the illusions of participation. Educational Action Research, 24(1), 134–149.CrossRefGoogle Scholar
  54. Judge, K., Barnes, M., Bauld, L., Benzeval, M., Killoran, A., Robinson, R., & Zeilig, H. (1999). Health action zones: Learning to make a difference. Essex: PSSRU.Google Scholar
  55. Kindon, S., Pain, R., & Kesby, M. (2007). Participatory action research approaches and methods: Connecting people participation and place. London: Routledge.CrossRefGoogle Scholar
  56. Kothari, A., & Armstrong, R. (2011). Community-based knowledge translation: Unexplored opportunities. Implementation Science, 6(1), 59.CrossRefPubMedCentralGoogle Scholar
  57. Kothari, A., & Wathen, C. N. (2013). A critical second look at integrated knowledge translation. Health Policy, 109(2), 187–191.CrossRefPubMedCentralGoogle Scholar
  58. Lazenbatt, A., Lynch, U., & O’Neill, E. (2001). Revealing the hidden ‘troubles’ in Northern Ireland: The role of participatory rapid appraisal. Health Education Research, 16(5), 567–578.CrossRefPubMedCentralGoogle Scholar
  59. Ledwith, M. (2015). Community development in action: Putting Freire into practice. Bristol: Policy Press.CrossRefGoogle Scholar
  60. Ledwith, M., & Springett, J. (2010). Participatory practice participatory practice. Bristol: The Policy Press.Google Scholar
  61. Lundy, P., & McGovern, M. (2006). Participation truth and partiality: Participatory action research community-based truth-telling and post-conflict transition in Northern Ireland. Sociology, 40(1), 71–88.CrossRefGoogle Scholar
  62. Marmot, M. (2010). Fair society health lives: The marmot review. http://www.instituteofhealthequity.org/resources-reports/fair-society-healthy-lives-the-marmot-review. Accessed 4 Jan 2018.
  63. Marston, C., & Renedo, A. (2013). Understanding and measuring the effects of patient and public involvement: An ethnographic study. The Lancet, 382, S69.  https://doi.org/10.1016/s0140-6736(13)62494-0.CrossRefGoogle Scholar
  64. McIntyre, A. (2003). Through the eyes of women: Photovoice and participatory research as tools for reimagining place. Gender Place and Culture: A Journal of Feminist Geography, 10(1), 47–66.CrossRefGoogle Scholar
  65. McGuiness, F. (2016). Income inequality in the UK. http://www.instituteofhealthequity.org/projects/fair-society-healthy-lives-the-marmot-review. Accesed 4 Jan 2018.
  66. Mockford, C., Staniszewska, S., Griffiths, F., & Herron-Marx, S. (2012). The impact of patient and public involvement on UK NHS health care: A systematic review. International Journal for Quality in Health Care: Journal of the International Society for Quality in Health Care/ISQua, 24(1), 28–38.CrossRefGoogle Scholar
  67. NCCPE. (2009). The beacons project. http://www.publicengagement.ac.uk/beacons. Accessed 4 Jan 2018.
  68. NIHR. (2006). Best research for best health: a new national health research strategy How the NHS in England will contribute to health research and development over the next 5 years. London: DHGoogle Scholar
  69. NIHR. (2015). Going the extra mile: Improving the nation’s health and wellbeing through public involvement in research. https://www.nihr.ac.uk/patients-and-public/documents/Going-the-Extra-Mile.pdf. Acessed 4 Jan 2018.
  70. Okereke, E., Archibong, U., Chiemeka, M., Baxter, C. E., & Davis, S. (2007). Participatory approaches to assessing the health needs of African and African-Caribbean communities. Diversity in Health and Social Care, 4(4), 287–301.Google Scholar
  71. Oliver, S., Liabo, K., Stewart, R., & Rees, R. (2015). Public involvement in research: Making sense of the diversity. Journal of Health Services Research and Policy, 20(1), 45–51.CrossRefPubMedCentralGoogle Scholar
  72. Pain, R., Askins, K., Banks, S., Cook, T., Crawford, G., Crookes, L., & Houston, M. (2016). Mapping alternative impact: Alternative approaches to impact from co-produced research. Durham: Centre for Social Justice, Universty of Durham.Google Scholar
  73. Reason, P., & Heron, J. (1994). Three approaches to participatory inquiry. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research. London: Sage.Google Scholar
  74. Reason, P. (1998). Political epistemological ecological and spiritual dimensions of participation. Studies in Cultures Organizations and Societies, 4(2), 147–167.CrossRefGoogle Scholar
  75. Reason, P., & Bradbury, H. (2001). Handbook of action research: Participative inquiry and practice. London: Sage.Google Scholar
  76. Reason, P., & Rowan, J. (1981). Human inquiry: A sourcebook of new paradigm research. Chichester: Wiley.Google Scholar
  77. Scott-Samuel, A., & Springett, J. (2007). Hegemony or health promotion? Prospects for reviving England’s lost discipline. The Journal of the Royal Society for the Promotion of Health, 127(5), 211–214.CrossRefPubMedCentralGoogle Scholar
  78. Somekh, B. (2010). The collaborative action research network: 30 years of agency in developing educational action research. Educational Action Research, 18(1), 103–121.CrossRefGoogle Scholar
  79. Springett, J. (2001). Appropriate approaches to the evaluation of health promotion. Critical Public Health, 11(2), 139–151.CrossRefGoogle Scholar
  80. Springett, J. (2005). Geographically-based approaches to the integration of health promotion into health systems: A comparative study of two health action zones in the UK. Promotion and Education, 12(3_suppl), 39–44.CrossRefGoogle Scholar
  81. Springett, J., Owens, C., & Callaghan, J. (2007). The challenge of combining ‘lay’knowledge with ‘evidence-based’practice in health promotion: Fag ends smoking cessation service. Critical Public Health, 17(3), 243–256.CrossRefGoogle Scholar
  82. Springett, J., & Young, A. (2002). Comparing theories of change and participatory approaches to the evaluation of projects within health action zones: Two views from the north west on engaging community level projects in evaluation. In L. Bauld & K. Judge (Eds.), Learning from health action zones. Chichester: AeneasPress.Google Scholar
  83. Staley, K., Buckland, S. A., Hayes, H., & Tarpey, M. (2014). ‘The missing links’: Understanding how context and mechanism influence the impact of public involvement in research. Health Expectations, 17(6), 755–764.CrossRefPubMedCentralGoogle Scholar
  84. Staniszewska, S., Brett, J., Mockford, C., & Barber, R. (2011). The GRIPP checklist: Strengthening the quality of patient and public involvement reporting in research. International Journal of Technology Assessment in Health Care, 27(4), 391–399.CrossRefPubMedCentralGoogle Scholar
  85. RCUK. (2011). Concordat for engaging the public with research. http://www.rcuk.ac.uk/pe/Concordat/. Accessed 4 Jan 2018.
  86. Van Bekkum, J. E., & Hilton, S. (2015). UK research funding bodies’views towards public particpation in health related research decisions: An exploratory study. BMC Health Services Research, 14(1), 318.Google Scholar
  87. Waterman, H., Tillen, D., Dickson, R., & de Koning, K. (2001). Action research: A systematic review and guidance for assessment. Health Technology Assessment (Winchester England), 5(23), iii–157.Google Scholar
  88. Wills, J., Evans, D., & Samuel, A. S. (2008). Politics and prospects for health promotion in England: Mainstreamed or marginalised? Critical Public Health, 18(4), 521–531.CrossRefGoogle Scholar
  89. Wimpenny, K. (2013). Using participatory action research to support knowledge translation in practice settings. International Journal of Practice-based Learning in Health and Social Care, 1(1), 3–14.CrossRefGoogle Scholar
  90. Wistow, G., & Barnes, M. (1993). User involvement in community care: Origins purposes and applications. Public Administration, 71(3), 279–299.CrossRefGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  1. 1.School of Public HealthUniversity of AlbertaEdmontonCanada

Personalised recommendations