patient, carer & public involvement in clinical guidelines: the nice experience

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Patient, carer & public involvement in clinical guidelines the NICE experience Victoria Thomas Associate Director, Patient & Public Involvement Programme

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Presentación de Victoria Thomas, Associate Director, Patient & Public Involvement Programme de NICE, sobre la participación de pacientes, ciudadanos y público en general en el desarrollo de guías de práctica clínica del NICE. Ponencia realizada en la Jornada Científica GuíaSalud 2010 "La participación de los pacientes en las Guías de Práctica Clínica".

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Page 1: Patient, carer & public involvement in clinical guidelines: the NICE experience

Patient, carer & public involvement in

clinical guidelines –

the NICE experience

Victoria Thomas

Associate Director, Patient & Public Involvement Programme

ipmunnoz.iacs
Cuadro de texto
May not be reproduced without the permission of NICE
Page 2: Patient, carer & public involvement in clinical guidelines: the NICE experience

Core principles of all NICE guidance

• Comprehensive evidence base

• Expert input

• Patient and carer involvement

• Independent advisory committees

• Genuine consultation

• Open and transparent process

• Equalities considerations

• Regular review

Page 3: Patient, carer & public involvement in clinical guidelines: the NICE experience

Opportunities for involvement exits for all types of

NICE guidance

Patient and public involvement:

in what?

Page 4: Patient, carer & public involvement in clinical guidelines: the NICE experience

NICE patient and public

involvement policy

The views of patients and the public matter to NICE.

We want to involve them, as well as doctors, nurses,

other health professionals and managers in our

work.

By working with patients and the public and

organisations that represent their interests, NICE

aims to produce guidance that addresses patient/

public issues, reflects their views and meets their

health needs.

Page 5: Patient, carer & public involvement in clinical guidelines: the NICE experience

Patient involvement: when?

Patient/ public

participation throughout

development and

implementation

Topic suggestion

Referral

Scoping

Development

Consultation

Publication

Supporting implementation

Page 6: Patient, carer & public involvement in clinical guidelines: the NICE experience

Patient involvement: how?

• Direct input: membership of NICE advisory bodies

(minimum 2, often 3, can be 6!)

• Consultation with patient and voluntary

organisations

• Patient/carer experts (personal testimony)

• Citizens Council (societal values)

• Patient/public versions of NICE guidance

Page 7: Patient, carer & public involvement in clinical guidelines: the NICE experience

What information do patients and

carers provide to NICE?

• The personal impact of their condition

• Outcomes patients want help with

• The impact of treatment on outcome, symptoms, physical &

social functioning, quality of life

• Impact on family, friends and employers

• Ease of use, side effects

• Patient preferences

• Subgroups who might benefit more/less from treatment

• Challenges to professional or researcher views

• Areas needing further research

Patient evidence is most useful when presented as a summary that

balances positive and negative views

Page 8: Patient, carer & public involvement in clinical guidelines: the NICE experience

Patient involvement - recruitment

• Minimum of 2 lay members per development group

• Payment offered

• Open and transparent recruitment process - website

• Anyone with an interest can apply

– no formal qualifications or association with patient organisation

needed

• Formal job description/person specification

• Equality data monitoring & conflict of interest forms

• Works best with combination of patients, carers and

those from organisations

Page 9: Patient, carer & public involvement in clinical guidelines: the NICE experience

Example of a patient ‘person

specification’

• No formal qualifications are needed

• (In)direct experience of the condition

• Understanding the views of a wider network (e.g. as a patient group member/employee)

• Time to commit to group meetings

• Familiarity with medical & research language

• Communication/ team working skills

• Not representing an organisation, or just one point of view

Page 10: Patient, carer & public involvement in clinical guidelines: the NICE experience

Patient involvement - support

• Patient & Public Involvement Programme (PPIP)

– advises NICE on methods for involving patients, carers and the public

– identifies patient and community participants (organisations and individuals)

– provides information, training and support to patients and lay people who engage with NICE (as individuals or organisations)

Page 11: Patient, carer & public involvement in clinical guidelines: the NICE experience

Patient involvement - training

• Training tailored to involvement activities

– setting clinical questions

– different types of studies

– appraising and evaluating evidence

– „critical appraisal‟ exercise

– key statistical terms

– drawing up recommendations

– health economics - why we need it

– exercise using a cost-effectiveness case study

• Opportunity to hear from past lay members

• Follow-up training also offered towards end of

development

Page 12: Patient, carer & public involvement in clinical guidelines: the NICE experience

Dissemination of guidelines to a lay

audience

• All clinical guidance produced in versions for patients and the public, known as “Understanding NICE Guidance”

• Plain English translation of guidance, not detailed patient information

• Includes key patient support organisations for further information

Page 13: Patient, carer & public involvement in clinical guidelines: the NICE experience

Collecting patients’ views - options

• Formal analysis of rigorous qualitative research

• Co-opted expertise and peer review

• Focus groups (multiple sclerosis, heart failure, eating disorders, self-harm, violence)

• Interviews (MS, self-harm, parent education)

• Workshops (young people with diabetes, cancer in children and young people)

• Patient conference surveys (lung cancer, cancer in children and young people)

• Patient testimonials (most mental health guidelines)

Page 14: Patient, carer & public involvement in clinical guidelines: the NICE experience

Benefits of patient involvement

• Patients have their own unique perspectives on

- their condition

- what constitutes good and poor care

- the outcomes they want from treatment and care

- risks, benefits and acceptability of treatment

- preferences for treatment and management options

- information and support needs

• Guideline recommendations can address and integrate

these to produce patient-centred guidance

• Impact & added value……..

Page 15: Patient, carer & public involvement in clinical guidelines: the NICE experience

Impact - patient preferences

Case study – Antipsychotic drugs for

schizophrenia

Evidence showed little difference in

effectiveness between „newer‟

antipsychotics.

Service users told us that side

effect profiles crucial to their

concordance with antipsychotic

drug regimes.

Recommendation to go with

patient preference, based on side effects

Page 16: Patient, carer & public involvement in clinical guidelines: the NICE experience

Impact – challenging clinical outcomes

Case study – Psoriasis

Clinical research told us

the amount of psoriasis was

what most affected the

quality of life.

Patients told us that the

location of the flare-up (e.g.

face or joints) was more

significant.

Page 17: Patient, carer & public involvement in clinical guidelines: the NICE experience

Impact: questioning assumptions

Case study – Kidney dialysis

Committee assumed

patients would prefer

dialysis at home.

Some patients told us

they disliked home

machines as it meant

their illness dominated

their lives.

Page 18: Patient, carer & public involvement in clinical guidelines: the NICE experience

Impact: entirely new data

Case study – people who

self-harm

Discussions with service

users informed the guideline

development group that

people who self-harmed

were not routinely offered

anaesthesia for suturing

wounds in the ED.

Nothing in the published

research to indicate this was

an issue.

Page 19: Patient, carer & public involvement in clinical guidelines: the NICE experience

Experience of care: information &

decision-making needsCase study - high dose rate

brachytherapy for cervical

carcinoma

Women who had had the

procedure told us it was both

distressing and painful –

nothing in the research

evidence to indicate this

Guidance explicitly includes

recommendations about pain

management and counselling

Page 20: Patient, carer & public involvement in clinical guidelines: the NICE experience

Patient involvement - difficulties

• Getting the „right‟ people

• Attitudes of health professionals and academics

• Managing expectations

• Range of the scope

• Patient evidence

• Integration into the group

• „Professional‟ patients

• Groups not represented (children, people with learning

difficulties etc.)

• Language and jargon

Page 21: Patient, carer & public involvement in clinical guidelines: the NICE experience

Patient involvement – resolving

difficulties• Explicit criteria on recruitment & conduct

• Training for health professionals and academics;

describing impact & added value

• Significant preparation before group work starts

• Clarity of what the guideline can, and cannot cover

• Ensuring use of good quality patient data, such as

www.healthtalkonline.org

• Formal and informal mechanisms for group integration

• Ensuring fresh recruitment for each topic

• Clarity about mechanisms for engaging with groups not

at the table

• Raising unacceptable or unclear terminology

Page 22: Patient, carer & public involvement in clinical guidelines: the NICE experience

Lay involvement in implementation

• Role for both organisations and individuals

• Low and high-level activities

– promotion & awareness-raising of guideline

– funding of posts

• Incorporation of recommendations into other literature

• Comparison of treatment against recommended

practice

• Commissioning and monitoring

• Potential role for decision aids, and formal shared

decision-making

Page 23: Patient, carer & public involvement in clinical guidelines: the NICE experience

Patient/public concerns with NICE

• Lack of research evidence on patient/carer views,

experiences and preferences

• Quality of life measures often determined by

professionals and don‟t reflect issues of most

importance to patients

• The weighting NICE places (or doesn‟t place) on

evidence from patients and patient groups

• Process doesn‟t take account of wider societal costs

• Technical language and modelling are difficult to

engage/challenge

• NICE „blight‟/ variability in access to NICE

recommended technologies/ Political priorities

dominate

Page 24: Patient, carer & public involvement in clinical guidelines: the NICE experience

In the spotlight…

Page 25: Patient, carer & public involvement in clinical guidelines: the NICE experience

Guidance on ‘patients’ experiences’

– upcoming project

• Guidance & quality standards – patients‟ experiences

• Principles of good patient experience

• Key areas:

– communication

– information

– shared decision-making

– Dignity

– partnership

– rights & responsibilities

• Generic and mental health topics

Page 26: Patient, carer & public involvement in clinical guidelines: the NICE experience

Future for NICE & patient involvement?

• Change in Government may mean different or new roles

for NICE

• Government rhetoric - „no decision about me without me‟

• Measurable “Quality Standards” now form a significant

part of NICE‟s future work:

– clinical effectiveness

– patient safety

– patient experience

• Social care (as well as clinical care) to be part of our

remit

• NICE will no longer be part of the NHS – what are the

implications for patient involvement?

Page 27: Patient, carer & public involvement in clinical guidelines: the NICE experience
Page 28: Patient, carer & public involvement in clinical guidelines: the NICE experience

Thank you

More information:

• Patient and public involvement at NICE:

www.nice.org.uk/getinvolved/patientandpublicinvolvement

• Patient guidance collection:

www.nice.org.uk/patientsandpublic/index.jsp

Contact the Patient and Public Involvement

Programme:

Email: [email protected]