Engaging with our audiences

We have enhanced our policy around patient and public involvement this year to improve how we engage with children and young people

NICE is committed to involving patients, service users, carers and the public in the development of its guidance, quality standards and other advice products. By involving the very people for whom the guidance will be relevant, we put the needs and preferences of patients and the public at the heart of our work.

In 2013/14, NICE placed an emphasis on establishing new relationships with service user organisations working in social care, as well as working with existing stakeholder organisations with wide remits covering health and social care, such as the MS Society or Parkinson’s UK, to let them know about NICE’s social care work programme.

Much of this work has helped to make sure that our standard model of patient and public involvement is flexible enough to take into account the new social care work programmes at NICE, and other new work programmes such as the guidelines on safe staffing levels.

NICE’s Citizen’s Council has also been focusing on social care and published their 16th report in July 2013 which explored what aspects of benefit, cost and need should NICE take into account when developing social care guidance.

We have enhanced our policy around patient and public involvement this year to improve how we engage with children and young people. Previously, this was being done on an ad-hoc basis but there is now a more systematic approach to including children and young people early on in the development process.

NICE already has some examples of great work in engaging with children and young people, for example testing out some guidance recommendations with groups of children and young people to make sure it makes sense for them.  NICE also carried out some field work on the looked-after children quality standard and got some really positive feedback from the children who said that this is the first time that anyone has ever outlined what services they can expect and be entitled to.

Throughout the year, we visited 39 organisations to discuss and promote patient and public involvement opportunities at NICE, including:

  • Mind
  • Diabetes UK
  • Age UK
  • Carers UK
  • Barnardo’s
  • Disability Rights UK

We carried out 18 speaking engagements, including 9 to international conferences to share best practice around patient and public involvement.

We have also initiated a pilot project for the development of two patient decision aids – tools to help people make better decisions about what treatment options are best for them. This project will be published later in the year.


Interview: Victoria Thomas – Associate Director for Public Involvement at NICE

Has patient and public involvement always been a part of NICE’s workings?

“When NICE was first established they had just one person in charge of patient involvement who was based in an external patient organisation and acted more in an advisory capacity to NICE.  That team soon grew in size and we were brought in house by NICE in 2003 in what was a really significant move. Becoming part of the furniture of NICE meant that people no longer saw patient and public involvement simply as an extra element added onto NICE.

“We’ve been able to move the agenda on a lot and there’s much less questioning about why we do patient and public involvement and more about how we can do it well and make it more effective. We have been able to demonstrate to people, both inside and outside of NICE, our value and prove that NICE products are better, more relevant and patient, carer or service user-focused as a consequence of having people with personal experience on the group.  Patient and public involvement is very much part of the DNA of NICE now!”

Is this the case elsewhere?

“NICE has served as a model for patient and public involvement around the UK and internationally. People look at the model that we have here with envious eyes. In a lot of the countries across the world, they are in a position where we were 15 years ago with people questioning the value of involving patients, carers and service users in guidance development.

“Sometimes you go and speak overseas and it is genuinely the first time that people have come across this concept of working in partnership with patients, carers or service users. It opens their eyes to the idea that people with a disease have expertise about their disease.”

How has patient, carer and service user involvement helped to shape NICE recommendations?

“One of the most striking examples of this was when we produced guidance on self-harm. We did a lot of work talking to service users about their experiences of care in the first 24 hours after self-harming. Every single person we spoke to and everyone on the guideline development group said that when a service user went to A&E they were not offered anaesthesia to suture their wounds. They were told things like ‘it didn’t hurt when you cut yourself so why do you want pain relief?’. There was nothing in the research literature that told us that this was an issue, but every single service user described the same story.

“So the service user experience fed into the guidance development to enable us to include a recommendation about offering pain relief before suturing wounds. If we had just relied on the research and the health professionals’ experience then we would not have got this recommendation.  It’s a recommendation that’s potentially transformative of someone’s experience of A&E.

“Another good example is around the recommendations we made on home versus hospital dialysis. The committee all assumed that people would prefer to have dialysis at home and it was equally cost effective.  But the patients we spoke to said that actually having a huge dialysis machine in your front room is a constant reminder to them of the fact that they have renal failure. So this was fed back and there is a recommendation that states that it should be down to patient preference as to whether they have hospital or home dialysis.”

How have you helped patients and the public understand some of the newer NICE initiatives like quality standards?

“We’ve done a lot of work, particularly with the voluntary sector organisations, getting them to support and endorse the quality standards and promote them to their memberships so that they are aware of the services they are entitled to. We communicate regularly with a local patient and public involvement structures out there in the service and we've highlighted when there’s been a new quality standard that they might be interested in. We've tried to promote the quality standards as a way of bench-marking peoples experiences of care against what we said should be a quality service.”