Public Involvement at NICE
During 2017/18 we have engaged, involved and supported people and communities across the breadth of NICE work programmes. In doing so, we have helped to ensure that NICE’s guidance, standards and advice are relevant and meet the needs of people using health and social care services. Additionally, we have strengthened NICE’s reputation for public involvement regionally, nationally and internationally by showcasing NICE’s work in this field.
2017/18 has been a busy, challenging and fulfilling year for the Public Involvement Programme. In particular, we finalised the recommendations from our strategic review of public involvement. Our full report is constructed around the priorities for improvement that the Board approved and demonstrates the real progress we have made over the year. In addition the report covers the PIP's routine key performance indicators.
The area against which we have made the greatest progress is in the routine and successful use of our social media profile to both bring people to us and to share messages with our audiences. There has been a ten-fold increase in Twitter mentions and an 8-fold increase in followers.
We continue to lead on NICE’s shared decision-making agenda, working closely with national and international partners to move towards a system that considers patient autonomy and choice, supported by high quality evidence, as the norm.
During 2017/18 we successfully recruited 185 lay members and patient experts to a range of committees from a total pool of more than 500 applicants.
This year we have seen an increase in people rating their experience of being on a NICE committee as ‘good’ or ‘excellent’ from 88% in 2016-17 to 91% in 2017-18. Several lay members noted their trepidation at starting on a NICE committee and whether their voices would be heard but then said that once they had settled into the committee they felt able to contribute and that their views were valued. As with previous years the role of the Chair was felt to be crucial to ensuring that lay members were fully included in discussions.
Some challenges encountered by lay members included quantitative evidence being preferred over qualitative data, complex clinical discussions and use of clinical language, and delays with expenses and papers. However the majority of lay members reflected positively on the impact for them personally of working on a NICE committee:
At any one time we support between 200 and 250 committee members. For the first time last year we supported a lay person to be part of the scoping process for a new guideline on the provision of support for adult carers. Usually lay members only get involved later on in the process but it was felt that earlier involvement would be valuable for this topic. The pilot went well and we worked with the lay member to co-produce a guide on the scoping stage for future lay members.
Events and training
We run regular training days for new recruits as well as a series of masterclasses.
Last November we ran a successful event with 21 core lay members of standing committees to celebrate their contribution to NICE guidance, explore challenges and share learning, and discuss new developments in NICE’s work. The programme was developed in collaboration with the lay members and included a mix of learning and sharing experiences, with presentations, exercises, and discussion.
Participants gave very positive feedback about the event. Lay members valued the opportunity to network, share experiences and ideas, and learn about new developments at NICE. The opportunity to focus on the minutiae of guidance development was also popular in the parallel sessions on health economics and use of patient/public evidence. In our panel Q & A, participants liked hearing from senior NICE staff and a non-executive director as they responded to questions posed by lay members.
During 2017/18 we undertook a project to increase the number of lay committee members that describe themselves as from black, Asian and minority ethnic groups.
We began with an engagement exercise to identify potential barriers to involvement from black, Asian and minority ethnic groups (BAME). We spoke with a wide range of organisations who told us that we would need to work at a local or regional level to meet people in their local communities rather than relying on national organisations. They also told us that our recruitment materials were too detailed, technical, and difficult to understand.
We also engaged directly with the public as well as speaking to organisations. The aim was to look at the recruitment documents and identify what information was needed and how it should be presented.
We worked with the Greater Manchester BME network to facilitate a focus group at their January 2018 quarterly meeting. Over 80 people attended and participated in the event, sharing their views around what could be improved.
The key messages were:
- use simple English and less technical language
- have information available in different languages
- ask for less information on the application form - have a one page overview of the key information, with other information in a FAQ document
- present information in more engaging formats (e.g. videos, infographics)
- have more options for involvement other than travel to London for meetings, as this this is a barrier to most people
- run focus groups and other engagement activities to increase inclusion.
Two more focus groups are planned in 2018; one in Birmingham and another in London. The findings of these focus groups will be reported to the NICE Equality and Diversity Group, with key recommendations for NICE to consider.
Peristeen case study
Two patient experts were invited to give their personal experiences of Peristeen to the Medical Technologies Advisory Committee (MTAC).
Peristeen is an irrigation system for people who experience problems with their bowels, for example, some people with spinal injury.
Patient experts do not normally directly participate in MTAC meetings however as Peristeen is a technology used directly by the patient, it was important for the committee to be able to ask questions of people with personal experience. The patients who attended the meeting said that Peristeen had been life changing in managing their bowel conditions.
The patients were able to:
- talk about what it is like using the technology and how it fits into their daily routine
- explain how frequently they need to use the technology, which was a key factor in the economic model and, explain their support and training needs: how it can take a while to become used to Peristeen, and that it might not be suitable for everyone
- give real world context to the patient-reported outcome measures. A small improvement meant the difference in being able to leave the house and not. One patient expert said that it had enabled them to go camping with their children, which had not previously been possible.
- describe how they had both considered colostomy before trying Peristeen.
The guidance clearly reflects the patient input. It states that Peristeen can improve people’s quality of life and promote dignity and independence. It also notes that it may take several weeks before a person is comfortable using it, which was a key point the patient experts made. The experts expressed gratitude at being able to help others by sharing their experiences with NICE.
Alongside our core work with the lay committee members and experts, we will build on the work of 2017/18 and continue to improve how we involve patients and the public in our work. We will:
- promote and build our Expert Panel to include more people in our work and introduce new ways for people to get involved. This includes piloting the early and ongoing involvement of people who use services in our guidance development
- increase the use of evidence generated by people using services in our work
- develop public involvement training for NICE staff to put public involvement at the heart of everything we do
- expand our use of social media and improve our web presence to establish a greater connection with patients and the public
- work across NICE to remove unwarranted variations across programmes.
We will deliver annual Shared Decision Making Collaborative meetings - enhancing opportunities for discussion and debate, and to share new developments in shared decision making. We will also continue to work across NICE in collaboration with our colleagues in the Medicines and Technologies Programme to put patients and people who use services at the heart of decisions about their care.
Finally, we will work collaboratively with our regional colleagues promoting the role of lay people and communities in helping to encourage the use of NICE guidance locally.
We look forward to sharing our progress over the year and meeting more of the fantastic and inspirational lay people who contribute so much to our work.
Interested in learning more about our work? Contact us at firstname.lastname@example.org