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)

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

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

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

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

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

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)

• Anything else?Text giving explanations

What we found 1 – who replied?

Who replied?

Partial responses 5% [n/a]

Who replied – by type of Expert?

What we found 2 – Patient Experts’ understanding

of the committee meeting

Reported understanding of committee questions, presentation and discussion

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.”

What we found 3 – Patient Experts’ opinions on their

involvement in the committee meeting

Patient Expert views on theirinvolvement in the committee meeting

24%

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...”

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

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)

What we found 5 – Overall experience of

committee meeting

Overall experience of committee meeting

19%

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.”

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

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/patientandpublichome.jsp