Key Issues in Participatory Health Research

This content discusses the importance of articulating the impact of participatory research, highlighting the need for improvement in articulation and how communities of participatory health researchers are addressing these issues. It explores paradigms, underlying assumptions, and the fundamental impact of participant involvement in research processes. The narrative emphasizes the shift towards inclusive, challenging, and action-oriented research approaches to improve the quality of enquiry and challenge traditional perceptions of expertise.

• Participatory Health Research
• Impact Articulation
• Paradigms
• Community Engagement
• Research Methodologies

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1. Dr Tina Cook Reader in Inclusive Methodologies Northumbria University tina.cook@northumbria.ac.uk 1

2. 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. 2

3. 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 3

4. ...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) 4

5. 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) 5

6. Identifies important research questions to improve life for those who are affected by the issue being researched. 6

7. 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 7

8. 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). 8

9. We dont 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 9

10. 10

11. .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) 11

12. 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) 12

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

14. Participatory researchers dont 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! 14

15. 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 15

16. 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) 16

17. 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/defa ult.aspx 17

18. 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) 18

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

20. 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 20

21. 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 21

22. 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 22

23. 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 23

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

25. 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 Vougioukalou S. (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 Inglis P. (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?type author&order ASC& value Cook%2C+Tina Bero L (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 25

26. 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 26