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

1. 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

3. 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

4. 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

5. 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

6. 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)

7. 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’?

8. 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

9. 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)

10. 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

11. 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.’

12. 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

13. 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

14. 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

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