National Institiue for Health and Clinical Excellence

Annual Review - 2009/2010

Being involved in developing NICE guidance can be a really positive experience for patients and the public

Putting patients at the heart of NICE's work

Patients, carers and members of the public are crucial to NICE, playing a key role in shaping our recommendations and helping to encourage uptake of our guidance.

They can get involved in NICE’s work in a number of different ways, including sitting on the groups and committees that develop guidance, responding to consultations and joining the Citizens Council.

NICE has a dedicated Patient and Public Involvement Programme (PPIP), which supports the lay people who work with us. Over the course of 2010/11, PPIP has provided direct support to 256 lay members of committees and working groups, that’s nearly double the number supported last year.

A total of 76 new people were recruited to committees and working groups during this period, and a further 61 people gave testimony on patient and community issues at technology appraisal and public health committee meetings.

Victoria Thomas, Associate Director of NICE’s PPIP, says that being involved in developing NICE guidance can be a really positive experience for lay members.

“People tell us that membership of these groups increases their self-esteem and their confidence to the point where some people are returning to work or education, often for the first time in many years.

“One of our lay members is even writing a book about her experiences of care, something that working with NICE has given her the confidence to do.

“It’s enormously gratifying to know that, not only is our guidance taking account of lay people views, needs and experiences, but for those lay people who work with us, there can be additional and unexpected personal benefits”

A busy year for the PPIP team saw the launch of a new search engine on the NICE website designed specifically to identify the patient versions of our guidance, which has had almost 92,000 unique visitors over 2010/11.

There was also success at the prestigious British Medical Association awards 2010 where the patient version of the guidance for the interventional procedure ‘Treating refractory Achilles tendinopathy with shockwave therapy’ won a ‘Highly commended’ prize. The patient version of the clinical guideline on ‘Rheumatoid arthritis in adults’ was also commended by the judges.

Find out more about NICE’s Patient and Public Involvement Programme, and how to get involved, on the NICE website.

Linda Facey

A patient’s perspective

Linda Facey describes her experience of being part of the team that produced the ovarian cancer guideline.

“My role on the guideline development group was to look at anything and everything, and see if there was a perspective from a patient’s point of view.

“So I got myself involved in several of the topics and read all the information around them. I had to say to myself, don’t worry too much about understanding every medical detail, just think about whether it impacts on how a patient might be treated, and how they are feeling.

“It gives you the chance to air your views in meetings and explain how patients get on with their treatments away from the clinical setting and out in the real world.

“It was really nerve-wracking walking into the guidance meeting on the first day as I was thinking I’d be in a room with people who are much, much cleverer than me. But the more I got involved - and this group was great as they seemed to value me from the moment I stepped foot in the room – the more they made me feel at home and offered room for me to say things.

“A space on the agenda was left specifically for patient issues. This was great for me as it felt like I was the most important person in the room. It was particularly noted if I wanted to make a point, and I was brought into the discussion.

“I’d highly recommend to other patients to get involved with NICE. I think it’s absolutely crucial that patients are involved in all pieces of NICE guidance.

“I think at some point everybody saw things from a different point of view because of something I said. Sometimes, something I didn’t even realise I had said!”