The document summarizes the findings of a survey of Patient Experts who have contributed to NICE technology appraisals. It finds that while many Patient Experts felt their contributions were listened to and meaningful, some felt excluded by technical discussions or unsure if their views were taken seriously. Most experts said having the opportunity to raise relevant issues was most important. The report recommends further improving understanding between patients and NICE and continuing to monitor the patient expert process.

1. The views of patients and carers
involved in the development of
NICE technology appraisals
Lizzie Amis
Patient and Public Involvement Programme
National Institute for Health and Clinical Excellence (NICE)

2. Outline of presentation
• Patient/carer involvement in the appraisals process
• The Patient Expert process at NICE
• Patient Expert questionnaire project:
– Why we did it
– What we did
– What we found, including sample comments
– Next steps

3. How can patients/carers
contribute to a NICE appraisal?
• National patient organisations can:
– Comment on draft documents
– Submit written evidence
– Nominate Patient Experts
• Individuals can:
– Be a lay member on the Appraisal Committee
– Attend the committee meeting as a Patient Expert

4. How do Patient Experts contribute?
• Attend first Appraisal Committee meeting of each topic
• Complete written statement before meeting
• Present evidence and comment from patient
perspective on:
– Experiences and views
– Benefits/ advantages of the therapy
– Downsides/ concerns of the therapy

5. Why did we do this project?
• Surveyed Patient Experts a few years ago (Phase 1)
• Made changes based on findings:
– ‘Lay Leads’ role
– Improved internal processes
– Better documentation
• Wanted to see whether:
– changes had made a difference
– there were further possible improvements

6. Patient Expert Questionnaire:
what did we do?
Phase 1
• Developed a questionnaire asking Patient Experts about
their involvement in a NICE appraisal
• Piloted the questionnaire
• Sent to all Patient Experts who attended a committee
meeting between May ’06 and Oct ’07
• Two rounds of chasing for responses
Phase 2
• We repeated the process with those who attended
(July ‘10 – Dec ‘11) – but using SurveyMonkeyTM

7. Patient Expert Questionnaire:
what did we ask about?
• About you
• Information and support before the day
• Practical arrangements and support on the day
• Experiences during the committee meeting
• After the meeting
• What is most important to you? (Phase 2)
Text giving explanations
• Anything else?

8. What we found 1 –
who replied?

9. Who replied?
Partial
responses
5% [n/a]

10. Who replied – by type of Expert?

11. What we found 2 –
Patient Experts’ understanding
of the committee meeting

12. Reported understanding of committee
questions, presentation and discussion

13. Free text comments –
understanding of committee meeting
Positive
• “The meeting was well organised and well run.”
• “There was opportunity to discuss angles of my
submission and re-affirm my position on certain aspects.”
Concerns
• “I felt totally out of my depth and excluded when the
technical/statistical information was shared.”
• “A lot of the presentation went over my head. There was a
lot of discussion [...] which didn’t mean very much to me.”

14. What we found 3 –
Patient Experts’ opinions on their
involvement in the committee meeting

15. Patient Expert views on their
involvement in the committee meeting
24%

16. Comments – Patient involvement
in committee meeting
Positive
• “Felt my presence worthwhile not just tolerated. My contribution
listened to with interest. Treated with consideration.”
• “I think my comments were taken seriously […] I was given
time and opportunity to contribute at several stages of the
meeting.”
Concerns
• “The real issue is whether patients are taken seriously and
listened to in the meeting.”
• “There was patient experience as far as goes side effects etc,
however the patient experience is far more than this...”

17. What we found 4 –
What is most important to you?

18. What is considered most important by
our patient experts? (Phase 2 only)
Ranked in priority order:
1. Having the opportunity to raise the issues I felt relevant
2. Feeling that my contribution made a difference
3. Contact and support before the committee meeting
4. Understanding the committee discussions
(A further six criteria were all less important)

19. What we found 5 –
Overall experience of
committee meeting

20. Overall experience
of committee meeting
19%

21. Comments – Overall experience
Positive
• “I thought it was a very well-thought out process, and
feel honoured to have been a part of it.”
• “I feel the Patient Expert process works very well. The
only improvement would be to have a better
understanding of the technology jargon.”
Concerns
• “The process needs to be made more human and
accessible.”
• “Patient organisations by and large know how NICE
works […] The question is whether NICE […] has
developed a similar understanding of patients and
patient organisations.”

22. Next Steps
• Complete written report
• Identify further areas for improvement
• Present findings at conferences and in journals
• Design exit survey with patients for continual,
ongoing monitoring

23. Contact details & more info
Lizzie Amis
PPIP Programme Manager
lizzie.amis@nice.org.uk or +44 (0) 20 7045 2056
Patient and Public Involvement at NICE:
http://www.nice.org.uk/getinvolved/patientsandpublic/patientan