Public involvement in health research

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Public involvement in health research

• Dr Sara Morris
• Lancaster University

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What is it?
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The basics

• Who?
• How?
• When?

• Individuals and/or
• groups
• Actively involved in the research process
• At any stage in the research process

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Terminology

• Consumer
• Supermarket connotations
• Implies choice (Telford et al, 2002)
• Service user and carer
• Lay researcher / Co-researcher
• Past patients, non-patients, their friends and
  families

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The Public

• Members of the public and people who use services
• make a distinction between those who are
  professionally engaged in health or social care
  research, and those who are ultimately end users
  of research in health and social care (INVOLVE)

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Types of involvement

• Ownership
• Controlled by lay people
• Collaborative
• Active partners
• Consultative
• Opinions and views of lay people canvassed
• Passive
• Lay support, but not involved

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Users can be involved

• at the policy level
• Improving the way
• decisions are made about what should be a
  priority for research
• research is commissioned (chosen and funded)
• at the research level
• Improving the way
• research is carried out
• research findings are communicated
• at the governance level
• Improving the way
• the quality and relevance of research is
  monitored

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Why do it?
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Should be involved UK policy

• 2.2.6 Relevant service users and carers or their
  representative groups should be involved wherever
  possible in the design, conduct, analysis and
  reporting of research
• Research Governance Framework (ed.2 2005)

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Theoretical reasons

• Ethical
• Relevance to community
• Methodologically helpful
• Pleasure
• Ideally, members of the public should be
• equal partners regarding the major decisions
  taken about the research and the whole research
  process, with the research focus being driven by
  users concerns. (Ramon, 2003 18)

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Is this a good idea?

• Often seen as unproblematic but can be
  contentious
• Do ill people want to be involved? yes, but on
  their own terms (Beresford)
• emphasises the interdependent status of service
  users as citizens requiring assistance but with
  the right to autonomous decision making (Barnes
  Walker 1996 379)
• More time and effort needed to do it properly
• May need to adjust attitudes be open to change

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The effects of lay involvement

• Changes to research questions were made
• New or revised questionnaires, interview designs
  etc.
• New ways of collecting data
• Able to include many more people to provide data
• Explanations of data related directly to how
  people experience the delivery of services
• Use of networks to tell other people about
  findings
• Finding ways to change services, based on the
  research findings, and in measuring those changes
  
• Increased the number of service users/carers in
  research
• FROM Barnard A et al (2005) Summary of PC11
  Report. An evaluation of consumer involvement in
  the London Primary Care Studies Programme.
  INVOLVE

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Some primary care examples

• Community engagement projects
• Halton PCT Health history project
• Skelmersdale Stronger, safer communities
• Service evaluation/development
• Chesterfield PCT Evaluation of a nurse-led unit
• Blackburn South Asian Women and Post Natal
  Depression
• PPI work (user led)
• Cumbria The Needs and Wants of Older People from
  the NHS
• Blackpool Carer Survey for Cardiac Patients and
  their Carers

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How to do it?
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Things to think about

• Who to get involved
• General or specific service users?
• Where to find them
• Pre-existing groups and organisations
• Advertise
• How to get them involved
• Develop a relationship with them
• Be very clear about what they can expect
• Ask people about how and when they would like to
  be involved

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Getting started

• I simply suggest that you get involved with
  outside groups even if you are not doing any
  research just now. In this way you will build up
  fruitful relationships and generate wonderfully
  rich insights into healthcare issues, or issues
  affecting healthcare, well before the genesis of
  any research exercise.
• (Earl-Slater, 2004 30)

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Working together

• Research involvement for both Users and Health
  Professionals should offer the opportunity to
  create good working relationships through
• Clear communication
• Respect for each other
• Willingness to learn

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Involvement work at

• Workshops
• North West Users Research Advisory Group
• Individual advice and training
• Resource centre

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Contact details

• Dr Sara Morris
• RD Manager
• Bowland Tower East Lancaster University
  Lancaster LA1 4YT
• Health RD NoW
• Institute for Health Research
•  01524 592656
• s.m.morris_at_lancaster.ac.uk