1. Quality Improvement Network Meeting
Patient and Public Involvement in QI – the case for how and why
Quality Improvement Network Meeting
Victoria Thomas, Public Involvement Programme

2. Patient involvement – it’s been around longer than you think…

3. Core principles of all NICE guidance
Comprehensive evidence base
Expert input
Patient and carer involvement
Independent advisory committees
Consultation
Regular review
Open and transparent process

4. Involvement as core business
“The expertise, insight and input of these patient members is essential to the development of all NICE guidance and advice, and helps us to make sure that our work reflects the needs and priorities of those who will be affected by them.” NICE Charter “Those of us with the condition are the REAL experts on how it feels. Others, no matter how brilliant, cannot have that insight.” Patient member, Guideline Committee

5. Public Involvement Programme (PIP)
Supports the involvement of patients, service users, carers and the public across NICE work programmes
Advises NICE & its collaborating centres on methods of involvement
Identifies
participants
(organisations and
individuals)
Provides information,
training and support to people who
engage with NICE (as individuals
or organisations)

6. Why should we involve patients and the public?
New evidence and information
Challenges to evidence/conventional wisdom e.g. preferred outcomes
Qualitative context to quantitative data
Challenges to professional assumptions

7. Key stakeholders for NICE
Lay committee members: at least lay people on each committee
Expert witnesses: Patients & their advocates providing statements of personal experience at committee meetings
National patient/VCS organisations and local Healthwatch: submit evidence and comment during consultations
Public: observe NICE meetings and comment during consultations.
Who does NICE involve?
People with personal experience of the condition
Family and friends providing care
People who have an advocacy role
Organisations representing patient and public interests
Members of the general public / citizens
Plus a range of health and social care professionals and other stakeholders
VCS = voluntary & community sector

8. How we find people Role description Person specification
Declaration of interests
Equality monitoring data
References
Shortlisting criteria
Interviews

9. How we support people Named contact person Induction Support materials
Formal training
Informal contact

10. What do we get from patients and the public?
Social values
Personal experience of living with a condition
Experience of treatment or care and its impact
Personal preferences and values
Risks, benefits and acceptability
Outcomes that people want from care
Information, communication and support needs
Equality issues and needs of specific groups
Recommendations for further research

11. What do people get from involvement work?
Empowers people to be more involved in managing their condition
Empowers people to become more involved in choices about their care and treatment
Ensures that health interventions and treatments are relevant to patients and carers, and meet their needs
Lay participants have reported developing new skills and confidence which has helped them in their daily life
“Being involved with NICE means I've kept my own skills up to date (such as my IT skills) – I had to take early retirement 15 years ago after developing spinal problems. Generally, it has boosted my confidence and self-esteem.”
Lay member, Guideline Committee

12. People’s feedback
“The Chair always made me feel my contribution was important.”
“I found that as a patient member, I was treated with respect and as an equal member of the group. My views were given equal consideration to others.”
“A lot of medical terminology for a patient to get used to.”
“I sometimes felt like the views of the patient members weren't taken seriously or given the same 'weight' as the academic or clinical members. This meant that after a while I was reluctant to contribute unless it was something I felt very strongly about.”

13. What difference does it make to NICE guidance?
High dose rate brachytherapy for cervical carcinoma
People who self-harm
Example – people who self-harm
One finding from focus group discussions was that people in mental distress who self-harmed were not routinely offered anaesthesia for stitching their wounds in emergency department. There was nothing in literature to indicate this was an issue. As a result the guideline included a recommendation that adequate anaesthesia and/or analgesia should be offered to people who have self-harmed throughout the process of suturing or other painful treatments. Other recs include staff training.
Example - 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.
Example - 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
NICE guidance includes recommendations about pain management and counselling
Example – Consultation with patient groups about 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
Kidney dialysis
Psoriasis

14. Ulcerative colitis – case study
Impact of condition
Population
Comparator
New treatment
New treatment gave complete remission, so ability to work and ‘gave their life back’
Housebound, unable to work and often hospitalised.
Patients told us…
Often affects teenagers and young adults – their ability to study, socialise, find a partner and so quality of life
Surgery unacceptable to younger adults – impact on fertility, irreversibility, risks and life-long impact

15. Ulcerative colitis – case study cont.
“Committee concluded that a drug treatment which brings disease into remission would have a major effect on quality of life, and that avoiding surgery was important to people with ulcerative colitis.”

16. Keys to successful involvement
Corporate commitment and policy
Identification of what input is required
Involvement of relevant people (individuals and organisations)
Open and transparent recruitment and consultation processes
Equality of status of committee members and good chairing
Induction, training, support and financial compensation for patient members
Advice and support for patient/VCS organisations
Evaluation and refinement of processes
Support for lay members and patient experts
NICE’s public involvement team offers induction and ongoing support to lay members and patient experts tailored to individual need
Invitation to a training workshop with a cohort of peers
Chairs’ training addresses patient support needs
Payment (attendance fee and travel/carer expenses)

17. My insights….
Lay people can genuinely give you insights you won’t find anywhere else.
They will challenge your presumptions about what is really important – this is a good thing, embrace it!
It won’t always work – this doesn’t mean that it’s not working, or that it’s not worth it
It will make a difference – to your outputs and to your credibility
You will create powerful champions for your organisation and its work
The people who work with you will become empowered in a way that neither you nor they expect

18. More information Public Involvement Programme @NICEGetInvolved
@NICEGetInvolved 18