Working alongside people and communities at NICE
Section 1: our approach to the strategy
We want to keep our approach as simple as possible.
We have 1 single vision, “To have a best-practice approach to involvement and engagement, to improve the impact of our guidance and ensure the best care for people and communities”.
We will realise this vision by delivering against 5 key areas of focus, each of which has a number of measurable aims to help us realise our vision over the next three years.
We will adopt 12 guiding principles that will underpin everything we do, helping to foster and cultivate a positive culture of involvement and engagement across our work.
1 vision
5 key areas of focus
12 guiding principles
Our vision
To have a best practice approach to involvement and engagement, to improve the impact of our guidance and ensure the best care for people and communities.
Our 5 areas of focus
1: Impactful involvement and engagement: involve the right people and communities
We will identify, involve, and engage the people and communities who will benefit from our guidance, and seek out more diverse experiences. Our approach will be meaningful, appropriate, and targeted on a case-by-case basis. We will ensure we listen and learn to maximise their input and impact.
2: Tailored approaches: tailor the way we involve and engage people and communities
There is no one size fits all approach to involvement and engagement. We will ensure our approaches are tailored to be more accessible and inclusive to meet the different needs of people and communities. We will break down the barriers that restrict engagement, such as complex committee structures or heavily bureaucratic processes. We will involve and engage with the right people, in the right way at the right time.
3: An innovative culture: test with, and learn from, new and innovative ways to work alongside people and communities
Established ways of working aren’t always the most effective. We will help everyone feel safe to speak up, to disagree openly and try new ways to involve and engage people and communities. We will adopt a test-and-learn approach, using feedback and evaluation to influence innovative developments in our methods and processes. This will ensure involvement and engagement remains meaningful and is informed by feedback, best practice and the health and care environment.
4: Productive partnerships: transform our approach and ways of working with partners
The expertise of people and communities is vital for us to realise our vision. We will build on our established relationships and work with partners, particularly those who can help us work with those who are often excluded or marginalised, to ensure their involvement and engagement with NICE increases the impact of our guidance.
5: Focus on people first: embed a culture of curiosity for involvement and engagement across NICE
Aligned to NICE principles, we will nurture a greater curiosity for championing and seeking out involvement and engagement opportunities. Actively seeking out and understanding what matters to people and communities and how and where our work has impact. This commitment will be led by our Executive Team and Board and adopted by everyone.
Our 12 principles
These principles underpin everything we do:
- Our involvement and engagement will be accessible and targeted on a case-by-case basis to maximise its impact.
- We will collaborate effectively and meaningfully with partners to shape and amplify the impact of NICE’s work.
- We will remove barriers to involvement and engagement, especially from groups that experience health inequalities.
- We will more effectively and consistently listen, use, and re-use the insight NICE gets from people and communities to maximise input and influence.
- Our work will be informed by evidence and aligned with best practice.
- We will help everyone feel safe to speak up, to disagree openly, test new approaches and learn from them.
- We will be clear, open, and honest about where we can act.
- We will adopt new ways of working and learn and adapt together; valuing people’s diverse skills.
- We will use the appropriate terminology throughout all our engagement.
- We will have a fair and transparent payment policy.
- Engagement with people and communities is valued by NICE and has visible commitment from the Board and executive team.
- We will create the conditions, culture and processes for staff to embed and value impactful involvement.
Section 2: how the strategy was developed
We know the value that the expertise and experiences of people and communities bring to our work at NICE, and in our recommendations to the health and care system. To help us understand what we were doing well and what could be improved, we commissioned an independent review and listening exercise to reflect on how we currently involve and engage people and communities.
Its purpose was to consider how we can have more impactful involvement and engagement at NICE. The independent review, conducted by Dr Charlotte Augst, found brilliant work and impactful engagement already happening in the production of NICE guidance, but our stakeholders and staff felt that we could further develop and build upon the work done to date. We were urged to be more curious about what matters to people and communities and in doing so, ensure we clearly heard from communities who are often marginalised and underrepresented.
This work has underpinned the development of a new three-year strategy for people and community involvement and engagement at NICE.
A strategy for the future
At NICE, we have always been passionate about involving people and communities in the work that we do. Now, we want to outline our commitment to grow the involvement, engagement and influence of people and communities across our organisation.
This strategy describes how we will improve the way we capture the collective wisdom and experiences of the people and communities we serve by 2027. Improving how we involve and engage people and communities within our work will ensure our guidance is relevant and impactful, which helps improve guidance uptake and ultimately provide the best care to people.
This strategy is our roadmap for the next 3 years to adopting a NICE-wide, innovative approach to involvement and engagement, where people and communities feel safe and empowered to work with us in partnership to impact and influence our guidance. We will use the principles outlined in this strategy to ensure that involvement and engagement with people and communities is approached with respect and is pragmatic and purposeful.
Our strategy will define where we will focus annually, over the next three years and how we will work with partners, stakeholders and staff. This allows everyone who works with NICE to understand our approach and what they can expect when we work together.
The scope of the strategy
NICE’s purpose is to get the best care to people fast, while ensuring value for the taxpayer.
Understanding what matters most to people, communities and the wider public informs the priorities of NICE, set against the context of the health and care landscape that we serve. As well as the development and implementation of the guidance we produce, our work must also consider wider public and societal opinion on what we prioritise, the best practice methodology and research evidence available, and the value that new medicines, health technology, procedures and guidelines bring to the health and care system.
This strategy specifically defines the best-practice approach we will take for involvement and engagement during development and implementation of NICE guidance. The outcome is to improve the impact of our guidance and ensure the best care for people and communities.
This strategy does not consider how we consider wider public and societal opinion on what we prioritise and value, our best practice approach to methodology and research evidence, and the value that new medicines, health technology, procedures and clinical guidelines bring to the health and care system. While this informs the strategic direction and approach NICE takes, this work is within the scope of the NICE Listens public engagement programme, the NICE prioritisation framework and Board and is reflected in the best-practice methods we use to develop our guidance and assess value through health technology appraisals.
Developing our strategy together
NICE can’t develop a strategy for involving and engaging people and communities on its own.
Building on the independent review and listening exercise, we engaged with people, communities and stakeholders who work with NICE to test and validate our proposed approach. Development of the strategy has been a collaborative effort with input, guidance and expertise provided by a range of individuals and groups.
We have endeavoured to maximise input from the people and communities we serve, alongside other trusted and valued stakeholders including representatives from the Voluntary and Community Sector, our own workforce and a range of experts in this field.
This has resulted in a strategy that will form the foundation of how we work together going forward.
To help develop our strategy, we...
Analysed over 80 responses to our survey from the NICE People and Communities Network, Voluntary and Community Sector Forum and NICE committee members.
Carried out over 30 dedicated interviews with members of the public and the community we serve, as well as colleagues at NICE.
Appraised the direction and scope of the strategy throughout development with colleagues, partners and stakeholders.
Conducted four dedicated focus groups to capture insights and hear directly from our workforce and people and partners who work closely with NICE.
Ran a public consultation on the draft strategy, receiving responses from 81 people and organisations, as well as holding additional focus groups.
Getting the language right
Using the right language can be difficult; word choices can exclude certain groups, individuals or communities.
In the past, we have referred to ‘public involvement’ at NICE. We also interchange the terms ‘patient, public, people and community’ and ‘involvement and engagement’. Throughout our work, we hope that the terms ‘people’ and ‘community’ reflects the multiple individuals and groups that we work with. This includes but is not limited to; patients, carers, people who use health and social care services, their families, health and care staff and voluntary and community organisations. We have used the term ‘involvement and engagement’ to encompass the range of best practice approaches we wish to adopt, from consultation through to decision-making.
Our intention is to be inclusive, giving those that both need and want to be involved every chance to do so. We will always endeavour to use language that reflects this intention.
Over time, as we learn more and best practice evolves, our language may change. We commit to continue to test and learn with people, communities and partners, to ensure we use appropriate terminology throughout all our engagement. We commit to a continual improvement process which will be co- produced with people and communities.
How will we know our strategy has been successful?
Ultimately, this strategy is about developing and delivering a best practice approach to involvement and engagement, to increase the impact of our guidance and ensure we get the best care for people and communities.
We define ‘best practice’ as shared learning from national and international partners. This includes best practice approaches for involvement and engagement and for developing guidance, such as:
- Guidelines International Network (G-I-N) Public Toolkit
- Health Technology Assessment International (HTAi) Values and Standards for Patient Involvement in Health Technology Assessment
- National Institute for Health Research (NIHR) UK Standards for Public Involvement.
We will also build the evidence base for ‘best practice’ by testing innovative approaches and learning through robust evaluations.
Over the next 3 years we will measure, monitor, and share our progress in delivering this vision and its aims. We have defined how we will measure success and will set annual targets to ensure we are making progress.
In addition, we will test that we are on track by seeking feedback from the people, communities, and partners we engage with, continually learning and adapting.
'To have a best practice approach to involvement and engagement, to improve the impact of our guidance and ensure the best care for people and communities.'
Impactful involvement & engagement
- The areas that matter most to people and communities are identified, and there is increased guidance uptake in these prioritised areas.
- Improved rating and feedback on experience, impact and psychological safety from people & communities involved in guidance development.
- Involvement opportunities and communications are accessible for people and communities, measured through quantitative, qualitative and narrative evidence sources.
- An updated payment policy fairly and transparently compensates people for their involvement and engagement.
Tailored approaches
- Introduction of a suite of involvement and engagement methods to enable a tailored approach to guidance development.
- Annual improvements in our reputational research survey results from the voluntary and community sector, across all domains.
- Increased participation and improved feedback on experience and impact from groups who experience health inequalities, including carers, advocates, or representatives.
An innovative culture
- The impact of any innovative or new ways of working are routinely evaluated and implemented more widely in guidance production.
- Guidance development methods will be updated to define tailored options and evaluation approaches for impactful involvement and engagement.
Productive partnerships
- Increased number of new partnerships formed with voluntary and community sector organisations to increase the uptake and impact of NICE guidance.
- Positive rating and feedback on experience and impact of the partnership from voluntary and community sector organisations.
Focus on people first
- Designate a NICE Board non-executive director with specific responsibility for people and communities involvement and engagement.
- Increase the proportion of NICE staff trained as involvement and engagement leaders, to build an organisational culture for involvement and engagement.
What will be different by 2027?
- We will establish our involvement and engagement steering group with membership from voluntary and community sector organisations and people with lived experience.
- Our involvement and engagement steering group will co-design and agree how we measure the baseline data and set annual targets.
- We will work with partners to identify prioritised topic areas and co-design programmes of work.We will launch and implement a new payment policy.We co-design and publish a framework to define tailored options for involvement and engagement and methods for measuring their impact.
- We will establish a training programme for NICE staff and recruit at least one representative from across all NICE directorates to become an involvement and engagement leader.
- We will designate a NICE Board non-executive director to have a specific responsibility for people and community involvement and engagement.
How will people and communities know our strategy is working for them?
While it is important to be able measure progress, it’s also essential that we define how delivery of a successful strategy will feel different for the people, communities and partners who work with us over the next 3 years. We retain our commitment to inclusivity, transparency, and active participation in healthcare decision-making.
In working together, they will...
Clearly see the influence and impact of their insight in our guidance.
Have their insight sought and valued.
Be working in partnership with NICE and co-producing work to amplify impact.
See improved uptake of guidance in areas most affected by health inequalities.
Have a positive experience of working with NICE.
Work alongside NICE in a way that works for them.
Feel actively involved in testing with, and learning from, new and innovative ways to work together.
Developing the plan and reporting progress
We have set a timeframe of 3 years from August 2024 to deliver this strategy. Our success will be dependent upon everyone understanding their part in helping to deliver our vision, aims and measures. To this end, we must ensure that people within NICE, partners and the people and communities we work alongside are clear how their role, responsibilities and behaviours support our collective vision.
We will translate our strategy into specific annual deliverables, targets and activities to be taken forward, in partnership with the people, communities and partners we work alongside.
Development and delivery of the strategy will be overseen by our involvement and engagement steering groups, to ensure we are on track and delivering our aims. People and community involvement and engagement activity will be spotlighted through our programme board reporting and associated measures reported regularly to the Board. This will feed into the NICE annual report and appropriately communicated with people and communities.
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