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".

1. Patient, carer & public involvement in
clinical guidelines –
the NICE experience
Victoria Thomas
Associate Director, Patient & Public Involvement Programme
May not be reproduced without the permission of NICE

2. 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

3. Patient and public involvement:
in what?
Opportunities for involvement exits for all types of
NICE guidance

4. 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.

5. Patient involvement: when?
Topic suggestion
Referral
Scoping
Patient/ public
participation throughout
Development development and
implementation
Consultation
Publication
Supporting implementation

6. 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

7. 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

8. 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

9. 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

10. 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)

11. 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

12. 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

13. 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)

14. 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……..

15. 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

16. 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.

17. 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.

18. 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.

19. Experience of care: information &
decision-making needs
Case 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

20. 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

21. 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

22. 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

23. 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

24. In the spotlight…

25. 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

26. 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?

28. 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: PPIP@nice.org.uk