Public involvement in research: addressing the obstacles

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Public involvement in research addressing the
obstacles
Karen Postle and Sarah Buckland
INVOLVE
kpostle_at_invo.org.uk sbuckland_at_invo.org.uk www.invo
.org.uk Tel [phone]
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INVOLVE
National advisory group. Funded by National
Institute for Health Research (NIHR) Promotes
active involvement of the public in NHS, public
health and social care research
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Research carried out with or by the public
rather than to, about or for e.g.
involvement on steering committees, commenting on
design, information leaflets, as joint
collaborators We use the term public to
include patients, service users, carers, and
representatives of people who use services
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Why is public involvement important ?

• People who are affected by research should have a
  say in what and how research is undertaken
• It can improve the quality of the research
  design, methods and findings
• People can be involved in the wider dissemination
  of research findings
• Research which has involved members of the public
  is likely to be much more relevant to social work
  practice

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Issues for practitioners

• Important to know about research which has
  involved the public
• How can practitioners identify research where
  there has been involvement?
• How can they locate research which has involved
  the public?

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• Lack of visibility of public involvement in
  contributing to publications
• The problem of identifying publications which
  evidence involvement

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Lack of visibility of public involvement in
contributing to publications

• Demands of the Research Assessment Exercise (RAE)
• Changing approaches to research and publication

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The problem of identifying publications which
evidence involvement

• 1. Different understandings and interpretation of
  terms
• Public involvement
• Participatory research
• Action research

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The problem of identifying publications which
evidence involvement (continued)

• 2. Public involvement is not always included in
  what is written about the research
• 3. Once published difficult to find
• PubMED preferred terms consumer and
  participation
• Social Care Online preferred terms user and
  participatory as well as involvement
• Necessary to use other sources how can these be
  identified?

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Seeds of hope

• Service user reviewers/editorial board members
• INVOLVEs ongoing work
• Research Register for Social Care

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Summary

• Brief introduction to INVOLVEs work
• Two specific obstacles to actively involving
  members of the public
• Seeds of hope
• Ideas and comments welcome

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References and web links

• Davies, R., Shocolinsky-Dwyer, R., Mowat, J.,
  Evans, J., Heslop, P., Onyett, S.,
• Soteriou, T. (2009). Effective involvement in
  mental health services the role of assertive
  outreach and the voluntary sector. Bristol Mind,
  www.bristolmind.org.uk Tel [phone]. Item
  in INVOLVE newsletter at http//www.invo.org.uk/p
  dfs/Spring09d3.pdf
• Hanley, B. et al (2004) Involving the public in
  NHS, public health, and social care research
  Briefing Notes for Researchers, Eastleigh,
  INVOLVE, (2nd Edition) http//www.invo.org.uk/pdf
  s/Briefing20Note20Final.dat.pdf
• INVOLVE, (2009) invoNET Bibliography 2,
  Eastleigh, INVOLVE http//www.invo.org.uk/invoNET
  .asp
• INVOLVE (2009) How to make public involvement in
  research more visible An invoNET
• workshop held on Thursday 12th February 2009 at
  the Kings Fund, London, Eastleigh, INVOLVE
  http//www.invo.org.uk/invoNET.asp
• Livingstone, J. (2007) Banking Matters to me
  The experiences of people with a learning
• disability seeking to use banking products and
  services, Friends Provident Foundation, Dorking
  with Association for Real Change (ARC)
  http//www.arcuk.org.uk/999268/en/bankingmatters
  tome.html
• NIHR www.nihr.ac.uk
• Postle, K., Beresford, P. and Hardy, S. (2008)
  Assessing Research and Involving People Using
  Health and Social Care Services Addressing the
  tensions, Evidence and Policy, 4(3), pp.251-262
• QAA (2008) Subject Benchmark Statement Social
  Work, Gloucester, QAA http//www.qaa.ac.uk/academi
  cinfrastructure/benchmark/statements/socialwork08.
  aspp1
• Research Register for Social Care
  www.researchregister.org.uk