Where does NICE guidance apply?

Transcript Where does NICE guidance apply?

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

NICE products

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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

PPI (individuals and organisations)

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Topic selection ‘PIN’

(DH gives remit to NICE) – ‘Patients involved in NICE’

Stakeholder processes

evidence, expert advisors – consultation, submission of

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

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

Looking at the evidence –

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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?

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)

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

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)

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

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.’

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

A dynamic, developmental

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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