"Patients at the Centre for Health Research – Patient, Carer and Public Involvement in NICE Decision-Making", presented by Victoria Thomas, NICE, at the EUPATI-UK Network Conference on 6 March 2014 in Leeds, UK

1. Patients at the Centre for Health Research –
Patient, Carer and Public Involvement in NICE
Decision-Making
Victoria Thomas
Associate Director: Public Involvement Programme, NICE
EUPATI Project Advisory Board member

2. What is NICE?
• national guidance and advice to improve health and
social care
• independent, authoritative and evidence-based guidance
to ensure quality and value for money
• for the NHS, local authorities, social care providers,
charities, and anyone with a responsibility for
commissioning or providing healthcare, public health or
social care services
• for patients, service users, carers, members of the public

3. What are NICE’s core principles
• Comprehensive evidence
base
• Expert input
• Public involvement
• Independent advisory
committees
• Genuine consultation
• Open and transparent
process
• Equalities considerations
• Regular review

4. What are our work
programmes?
• Technology appraisals
(medicines)
• Interventional procedures
(surgery)
• Medical and diagnostic
technologies
• ‘Highly specialised’ technologies
(medicines for very rare diseases)
• Guidelines for clinical conditions
• Guidelines for public health
interventions
• Guidelines for social care
• Quality standards for clinical,
public health and social care
topics
• Indicator development (QOF and
CCG OIS)
• Support for implementation
• Accreditation
• NICE Pathways
• R&D
• NICE Evidence services
• Medicines and prescribing advice
• Staffing levels guidance
• ……..

5. PPI at NICE – key principles
• Those most directly affected by our
guidance should have the opportunity to
contribute to its production – embedded in
our methods and processes
• Individual involvement – membership of
committees and groups
• Organisational involvement – consultation
with key groups
• Outputs for the public – plain English
versions

6. How are individuals involved?
• At least two lay people on each of NICE’s decision-
making committees, plus ‘expert witnesses’
• Open and transparent recruitment process – person
specification and role description
• ‘Specialist’ - on behalf of a particular population or
condition
• ‘Generalist’ - on behalf of a generic constituency of
patients
• Can be recruited for 1 or 2 meetings, for a project lasting
2 years, or for a 3-year term on a committee
• So far this year, over 200 individuals have been recruited

7. What do they tell us?
• Real life – living with conditions and disabilities,
effects of treatment
• Information that we can’t get through any other
source
• Challenges to presumptions about what people
what to achieve
• The outcomes that matter to the people that
matter
• In short – everything that’s missing from the
research!

8. How do we support people?
• Centralised team working across all of NICE’s
work programmes
• Board level policy – ‘top down’ support is vital
• Named team member for every lay person
working with us
• Attendance fees, plus expenses
• Informal advice, information, and advocacy
• Formal training and ongoing support
– critical appraisal & systematic reviewing
– health economics

9. What else do people need?
• Patients and the public are not ‘empty vessels’ – vital
expertise in their own right
• However, people need knowledge and information to
engage with ‘the system’
• Education, information and support to engage effectively
and to have influence, particularly over the research
agenda
• What the decision making organisations need from them,
and in what format/style
• Initiatives like EUPATI provide huge opportunities for
patients to enhance the way they can work with
organisations like NICE

10. More information
Public homepage
www.nice.org.uk/getinvolve
d/patientsandpublic
Search for NICE Guidance
for the Public
www.nice.org.uk/patientsan
dpublic/index.jsp
Contact us
pip@nice.org.uk