Advances in participatory health research: perspectives on impact

1. Dr Tina Cook Reader in Inclusive Methodologies Northumbria University tina.cook@northumbria.ac.uk Advances in participatory health research: perspectives on impact

2. Introduction to issues • the key issues relating to articulating impact of participatory research • why we need to improve the articulation of the impact of participatory research • how such issues are beginning to be addressed amongst communities of participatory health researchers.

3. Participatory health research (PHR) • Paradigm: • a set of underlying assumptions about the world and how it should be studied. • Key assumptions of PHR: • authentic participation is a defining principle • it is inclusive and therefore involves critical challenge • action is an expected part of the process • Direct relation of action research • differs in primary conceptual underpinning

4. Researching research • ...for many years research was done by people who had lots of power to say what life experiences they were researching about….And their researchers were called “experts” and they made their careers by researching people who were called “subjects” • (Keith – man with learning difficulties and researcher: Cook and Inglis 2008)

5. Key tenet of Participatory Research • “participation on the part of those whose lives or work is the subject of the study fundamentally affects all aspects of the research” (McTaggart 1997)

6. PHR: locating impact • Identifies important research questions • to improve life for those who are affected by the issue being researched.

7. PHR: making an impact • Supports active and challenging development of research proposals and carrying out that research • to improve quality of enquiry • to broaden basis for decision making about findings • to challenge perceptions of expertise • to redistribute knowledge

8. Our first answer is not always the best answer (David) • The more things just got blown into the air, the more fun it was...When we were discussing and debating stuff, during some of the discussion that we had, your mind slipped a few times before it settled. It’s like you started it off and someone would say something and it would be like, “Erm, I’m not quite sure of…” And then it started a bit of a debate up. And then by the time you finished the debate you had most of the answers and then it was like, “Erh.., you know, we’ve just answered it.” • (Cook & Inglis: 2008).

9. PHR: making an impact • We don’t want to do this unless it has an impact • (Cook:2011 Towards Inclusive Living) • Being part of the dissemination process at all stages of the research: learning is integral • embeds learning where it can effect change

10. Going swimming

11. Embedding the impact of PHR ….there is not participation followed by research and then hopefully action…there are countless tiny cycles of participatory reflection on action, learning about action and then new informed action which is in turn the subject of further reflection. Change does not happen at “the end”—it happens throughout • Wadsworth (1998)

12. The issue of weak articulation! • Key impacts articulated as: • Offers researchers new skills • Improves confidence of ‘participatory’ researchers • Improves dissemination • Followed by: • Improves focus of the research • Improves the questions asked • (Cook et al 2012)

13. Impacts of PHR • Who learns • The quality of the research design - science • The knowledge that is produced • The use of that knowledge • Future encounters: legacy

14. Why difficulties in recognising different types of impact? • Participatory researchers don’t wish to make unilateral claims • RCTs seen as universal gold standard • Historical bias against ‘soft’ impacts - use of ‘measure’ rather than demonstrate • Acknowledging ‘new’ experts leaves to methodological and political issues -Paradigm wars!

15. Making case for Participatory Practice • “loose connections exist between research efforts and clinical practice” Haines, A and Donald, A 1998 “an enormous amount of money is spent on clinical research but relatively little attention has been paid to ensuring that the findings of research are implemented in clinical practice” Bero et al 1998 “…passive approaches are unlikely to affect behaviour” Grimshaw JM et al 2001

16. Are we making progress? • “Where public engagement “pre-impact” was viewed by sections of the academic community as frivolous, faddish and tokenistic, it is now elevated as an integral component of impact-capture work and in plotting the pathways between research producer and research intermediary/end-user/collaborator. • (Watermeyer 2012:1)

17. The NIHR are promoting/supporting it • Involving patients and members of the public in research can lead to better research, clearer outcomes, and faster uptake of new evidence. http://www.nihr.ac.uk/awareness/Pages/default.aspx

18. INVOLVE - NIHR • Role: • “to bring together expertise, insight and experience in the field of public involvement, with the aim of embedding it as an essential part of the process by which research is identified, prioritised, commissioned, designed, conducted and disseminated” • INVOLVE (2012)

19. Purpose of engagement in research NIHR PHR Identify the important questions that research needs to answer Take an active and challenging part in the development of research proposals Be active researchers including in analysing the findings for meaning making Be part of the dissemination process – at all stages of the research • Identify the important questions that research needs to answer • Give their views on research proposals • Take part in clinical trials etc not just as subjects but as active partners in the research process • Publicise the results. • http://www.nihr.ac.uk/awareness/Pages/default.aspx

20. Patient and Public Involvement • Broad Term • on a steering committee • on and advisory group • carrying out parts of the research • developing the research • determining findings • dissemination • Hard to make claims for potential impact

21. The case for recognition • “Having set out the case that PHR inhabits different spaces and offers different ways of seeing, then it follows that there are also different ways of recognising validity and rigour for this paradigm. ..The responsibility for ensuring that participatory research …finds appropriate and powerful spaces to make a difference to current practice, lies in two courts, those of participatory researchers and those who review participatory research” • Cook 2012

22. What is happening • Communities of practice • are questioning the ability of traditional positivist research to bring about change – to have an impact. • have actively interrogated the role that privilege and power play in shaping our research agendas and outcomes • are improving the way we articulate the quality and impact of participatory (inclusive) research

23. International Collaboration for Participatory Health Research • over 100 researchers, health professionals and engaged citizens from many different countries interested in promoting PHR as a way to improve the health of people where we live. • Purpose of ICPHR (http://www.icphr.org) is to strengthen PHR • Quality • Credibility • Impact

24. The “fundamental source of legitimacy is the collective judgement of the people” (Gutmann and Thompson 2004: 9)

25. References • Broerse JEW, Zweekhorst MBM, van Rensen AJML and de Haan MJM (2010) Involving burn survivors in agenda setting on burn research: An added value? Burns 36 pp2 1 7 – 2 3 1 • Cook, T (2012) Where Participatory Approaches Meet Pragmatism in Funded (Health) Research: The Challenge of Finding Meaningful Spaces. FQS Vol 13(1) Art. 18 • Cook T, Boote J, Buckley N, Turnock C and VougioukalouS. (2012). Accessing Participatory Research Impact and Legacy. Retrieved from www.publicengagement.ac.uk/about/impact-analysis • Cook T, (2011). Towards Inclusive Living: A case study of the impact of inclusive practice in neurorehabilitation/neuro-psychiatry services. DoH Policy Programme Long Term Neurological Conditions. Retrieved from http://www.ltnc.org.uk/research_files/impact_inclusive.html • Cook T and InglisP. (2008). Understanding research, consent and ethics: a participatory research methodology in a medium secure unit for men with a learning disability. Retrieved from http://northumbria.openrepository.com/northumbria/browse?type¼author&order¼ASC&value¼Cook%2C+Tina • BeroL (1998) Closing the gap between research and practice: an overview of systematic reviews of interventions to promote the implementation of research findings. The Cochrane Effective Practice and Organization of Care Review Group. BMJ. (Clinical research ed.) 317:7156: 465-468

26. References continued • Grimshaw JM, Shirran L, Thomas R, Mowatt G, Fraser C, Bero L, Grilli R, Harvey E, Oxman A, O'Brien MA (2001) Changing provider behavior: an overview of systematic reviews of interventions. Med Care 39 (8) Suppl 2):II2-45. • Gutmann, A and Thompson, D (2004) Why Deliberative Democracy? Princeton University Press • Habermas J. (1970) Toward a theory of communicative competence. In Dreitzel H (ed.), Recent Sociology, No. 2, pp.115-48. London:Collier- Macmillan. • Haines, A and Donald, A (1998) Getting Research Findings into Practice, BMJ (Publishing Group) 317:72.1 • International Collaboration for Participatory Health Research (ICPHR) (2013) Position Paper 1: What is Participatory Health Research? www.icphr.org • INVOLVE Strategy (2012) Putting people first in research http://www.invo.org.uk/wp-content/uploads/2012/04/INVOLVEStrategy2012-15.pdf • McTaggart R (1997). Guiding principles for participatory action research. In Robin McTaggart (Ed.), Participatory action research: International contexts and consequences (pp.25-43). New York: Albany. • Wadsworth, Y (1998) What is Participatory Research? Action Research International, November (www.scu.edu.au/schools/gam/ar/p_ywadsworth). • Watermeyer R (2012):From Engagement to Impact? Articulating the Public Value of Academic Research, Tertiary Education and Management, 18:2, 115-130