Involving patients, carers and the public in the work of NICE

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Involving patients, carers and the public in the
work of NICE

• Barbara Meredith
• Patient and Public Involvement Programme, NICE
• James Lind Alliance Annual Meeting
• 3 December 2005

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NICE products

• Guidance
• Technology appraisals (E,W)
• Clinical guidelines (E,W)
• Interventional procedures (E,W,S)
• Public health (E)
• programme guidance
• intervention guidance
• Several versions full short quick
  reference guide information for the public
• Implementation guides

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PPI (individuals and organisations)

• Topic selection (DH gives remit to NICE)
• PIN Patients involved in NICE
• Stakeholder processes consultation, submission
  of evidence, expert advisors
• Committee and group membership
• One-off projects
• focus groups (MS, heart failure, eating
  disorders)
• interviews (self harm, parent education)
• workshops (young people with diabetes people
  with rare conditions)
• Citizens Council
• Implementation and dissemination

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PPIP role

• Advising NICE programmes and NCCs on PPI
  identifying wide range of perspectives
• Encouraging and supporting stakeholder
  involvement
• Providing information and training for
  patient/public contributors
• Working to job descriptions and person
  specifications website and press adverts
• Trouble shooting
• Evaluating

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Looking at the evidence achieving a P/P
perspective?

• Equal status of patient/public and clinical
  expertise? Identifying key clinical questions
  (KCQs)
• Whose outcomes were defined and researched for
  the evidence base? Is there an evidence base for
  the KCQs? For the patient perspectives?
• Whose costs are included in economic evaluation?
• How do levels of evidence affect guidance
  recommendations? quantitative vs qualitative
  the RCT gold standard
• Has there been extra work? (eg Cancer in
  children and young people conference Chronic
  fatigue syndrome survey of wider audience)

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Challenges for PPI in the NICE context (1)

• Recruiting stakeholder organisations and
  individual participants for very different topics
• Compare, say, specific nature of prostate
  cancer with general nature of surgical site
  infection maternity care with chronic illness
  mental health and falls in older people
• Website stakeholder e-mailings
• Handling diversity/controversy in patient/carer
  perspectives (as in others) representing or
  bringing a perspective?

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Challenges for PPI in the NICE context (2)

• Identifying key clinical questions and relevant
  outcomes for patients and carers prioritising
  guidance recommendations
• Appropriately responding to unanswered
  questions
• Digging deeper grey literature Dipex
  one-off projects
• Agreeing good practice points
• Making and prioritising research recommendations
  and encouraging action on them

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Stimulating diversity and relevance in PPI
involvement

• Engaging with
• small national, or local/community groups what
  helps to release energy and skills?
• black and minority ethnic groups prisoners
  homeless people refugees
• specific groups (people with learning
  disabilities, those with sensory impairment,
  homeless people, prisoners, refugees, young
  people - as appropriate for topic)

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What makes a difference?

• PPIP evaluation of PP involvement
• the Chair
• attitude of health professionals
• numbers
• openness to look at and critically evaluate
  evidence
• willingness to consider extra work

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Research recommendations (1)

• Long acting reversible contraception
• The scarcity of robust evidence to answer
  important clinical questions on the use of LARC
  methods by women in the UK has posed great
  challenges to the developers of this guideline.
  In the majority of cases, the guideline
  recommendations were based on extrapolated
  evidence that is indirect or of poor
  methodological quality.
• Large prospective cohort studies are needed to
  identify patterns of contraceptive use, which
  vary with age, ethnicity, marital status,
  fertility intention, education and lifestyle.

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Research recommendations (2)

• Depression in children and young people
• Further systematic review found no controlled
  trials that specifically looked at social and
  environmental interventions to prevent or treat
  depressive disorder in children and young people
• Key research recommendations include
• RCT to compare another self-help intervention
  compared with computerised CBT and treatment as
  usual
• Qualitative study examining experiences in the
  care pathway of children and young people and
  their families to inform decisions about what the
  most appropriate care pathway should be

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A dynamic, developmental process

• Guidance is subject to review but take-up of
  research recommendations?
• Raising wider awareness about NICE and its
  guidance should help create a virtuous PPI
  circle
• support individuals in their own experience
• promote local and national pressure for
  improvement
• feed back into review process

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Looking ahead

• NICE is part of a wider spectrum of patient and
  public involvement across the NHS and more widely
• NICE can help to raise awareness about, and
  encourage work on, the unanswered questions,
  but does not control choice of research topics or
  funding
• NICE can continue to refine its methodologies,
  for instance on guideline development and
  technology appraisal

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• Barbara Meredith, Project Manager
• Patient and Public Involvement Programme
• NICE
• 020 7067 5863
• barbara.meredith_at_nice.org.uk
• www.nice.org.uk