Dr Tina Cook
Reader in Inclusive Methodologies
Northumbria University
[email protected]
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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.
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Paradigm:
 a set of underlying assumptions about the world
and how it should be studied.
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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
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Direct relation of action research
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differs in primary conceptual underpinning
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...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”
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(Keith – man with learning difficulties and researcher: Cook and Inglis 2008)
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“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)
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Identifies important research questions
 to improve life for those who are affected by the
issue being researched.
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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
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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).
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We don’t want to do this unless it has an
impact
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(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
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….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
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Wadsworth (1998)
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Key impacts articulated as:
 Offers researchers new skills
 Improves confidence of ‘participatory’ researchers
 Improves dissemination
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Followed by:
 Improves focus of the research
 Improves the questions asked
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(Cook et al 2012)
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Who learns
The quality of the research design - science
The knowledge that is produced
The use of that knowledge
Future encounters: legacy
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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!
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“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
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“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/enduser/collaborator.
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(Watermeyer 2012:1)
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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
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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)
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NIHR
PHR
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Identify the important
questions that research needs
to answer
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Identify the important questions
that research needs to answer
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Give their views on research
proposals
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Take part in clinical trials etc
not just as subjects but as
active partners in the
research process
Take an active and challenging
part in the development of
research proposals
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Be active researchers including
in analysing the findings for
meaning making
Publicise the results.
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Be part of the dissemination
process – at all stages of the
research
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http://www.nihr.ac.uk/awar
eness/Pages/default.aspx
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Broad Term
 on a steering committee
 on and advisory group
 carrying out parts of the research
 developing the research
 determining findings
 dissemination
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Hard to make claims for potential impact
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“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”
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Cook 2012
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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
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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
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The “fundamental source of legitimacy is the
collective judgement of the people” (Gutmann
and Thompson 2004: 9)
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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/impactanalysis
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?type¼author&order¼ASC&
value¼Cook%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
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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/wpcontent/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
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