Genuine user involvement: what does it look like

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Genuine user involvement what does it look like?

• Alison Faulkner
• Mental health researcher service user

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Genuine user involvement

• Principles of service user involvement
• User involvement and the research process
• What does it look like?
• Examples
• The way forward?

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Principles for user involvement

• Clarity about the potential for involvement
  influence
• Respect for peoples views and experience
• Offer support and training
• User involvement policies procedures
• An openness to change
• A base of support accountability
• Offer payment other incentives
• Ideas about negotiating differences
• Power and empowerment

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Principles

• Active partnership
• Doing research with or by people who use
  services, not to, about or for them
• If research reflects the needs views of people
  who use services it is more likely to produce
  results that can be used to improve practice in
  social care services.
• (INVOLVE)

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Principles of service user involvement

• Clarity and transparency
• Empowerment
• Identity
• Commitment to change
• Respect
• Equal opportunities
• Theoretical approach
• Accountability
• Faulkner 2005

• Clarity and transparency
• Diversity
• Respect
• Flexibility
• Accessibility
• SURGE 2005

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Two examples

• Learning the lessons a multi-method evaluation
  of dedicated community-based services for people
  with personality disorder.
• Evaluation of Leeds survivor led crisis service.

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Learning the Lessons

• Service user involvement at all stages and all
  levels from design to dissemination
• Project steering group, advisory group
• Service users as researchers, reviewers,
  interviewers.
• Integrated research team-based approach

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LL What was good about it?

• Support for Researchers
• systematic debriefing
• peer support
• telephone contact with research supervisors
• Practical Arrangements
• Paid as consultants expenses
• Administrative support e.g. information packs,
  accommodation and travel arrangements
• Involvement and ownership of process as a whole
• Design, interviewing, analysis and report writing
• Training and team work
• Good quality research

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LL What was challenging?

• Amount of work co-ordination involved
• Expensive
• Time-consuming
• Personally challenging at times

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Evaluation of Leeds Survivor Led Crisis Service

• Commissioned by the crisis service
• Service user led evaluation
• 4 service users recruited
• Designed and carried out evaluation together
• Report written together
• Fed back to staff and management group
• (but not formally disseminated)

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Crisis service evaluation (2)

• A good experience for everyone
• Collaborative training
• Understanding of crisis
• Skills development
• Positive effects on service delivery
• Some uncomfortable findings
• Little external dissemination

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The Research cycle

Identifying topics
Prioritising
Commissioning
Designing research
Evaluating research
Managing research
Disseminating research
Undertaking research
Analysing interpreting
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Obstacles to genuine user involvement

• ?Government agenda
• Money
• Pharmaceutical companies
• ?
• Research careers
• Need for publications
• Concerns about quality
• Attitudes
• We know best

• Identifying topics
• Prioritising
• Commissioning
• Designing research
• Managing research
• Undertaking research
• Analysing interpreting
• Disseminating
• Evaluating

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Keeping the space

Support
Respect
Accessibility
Honesty, transparency
Flexibility
Good service user involvement
Resources
Payment
Information and Communication
Training
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Difference Distress Dissent
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Keeping the space
Empowerment

New knowledge and theory
Skills
Sharing the research gaze
Making change happen
Evidence - and what counts as evidence
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Some references

• Faulkner, A. (2004) The Ethics of Survivor
  Research Guidelines for the ethical conduct of
  research carried out by mental health service
  users and survivors. Bristol Policy Press on
  behalf of the Joseph Rowntree Foundation.
• Service User Research Group England (2005)
  Guidance for Good Practice Service user
  involvement in the UK Mental Health Research
  Network. London UK MHRN.
• Crawford, M et al (2007) Learning the lessons A
  multi-method evaluation of dedicated
  community-based services for people with
  personality disorder. National Coordinating
  Centre for NHS Service Delivery and Organisation
  RD, Department of Health.
• Faulkner A, Gillespie S, Imlack S, Dhillon K
  Crawford M (2008) Learning the lessons together.
  Mental Health Today Vol. 8 (1), February.
• INVOLVE (2007) Public Information Pack.
  www.invo.org.uk
• INVOLVE (2004) Involving the public in NHS,
  public health, and social care research Briefing
  notes for researchers as above.
• Direct Impact Service User and Carer Research
  Group (2004) Involving Service Users and Carers
  in Audit, Evaluation and Research and Other
  Projects to Improve and Develop Services. South
  West Yorkshire Mental Health NHS Trust.