This document is an archive of the work NIHR did between 2020 and 2024 to improve how we work with patients, carers and the public. For an up to date summary of what we are doing currently, please see Strategic Commitments for Public Partnerships.
Improving how we work with patients, carers and the public 2020 - 2024
At the NIHR, we work with different people and communities across our health and care research. We call these ‘public partnerships’ as these are active relationships and are not one-sided.
Partnerships between research teams, people and communities are important, expected and possible in all types of health and care research including research that NIHR funds. This includes:
- people participating in trials and studies
- people with lived experience shaping the design of research, or being involved in delivering it, sharing and using the results
- people reviewing, strengthening and helping make decisions about what research is funded
The importance of public partnerships
Hearing from people with lived experience can bring different perspectives to research. It can also improve the relevance, quality and impact of our research, making sure it’s relevant to the people it will affect.
Researchers and patients, the public, carers and service users should share knowledge and power, and everyone should benefit from being involved in the research. They would be an equal member of the research team, and their input and experience would be as important as those of the researchers.
Our plan for improving how we work with patients, carers and the public
There are great examples of partnership working across the NIHR and beyond. We also recognise that there are areas that can be strengthened including those highlighted in a review of public involvement called ‘Going the Extra Mile (.PDF)’. From these, we have prioritised 5 areas that we will be focusing on in the coming years.
- Equality, diversity and inclusion
- Standards, processes and incentives
- Digital engagement
- Capacity building
- Impact and learning
Each area has a set of priorities for improvement. These priorities are based on findings from a series of researcher and public workshops. Find out more about this process and the 16 actions that were identified under each improvement area in our Next steps report.
We are working on an updated strategy for public partnerships, which will build on the Going The Extra Mile report and will be published before the end of the year.
What we are doing to improve partnerships with patients, carers and the public:
Equality, diversity and inclusion
We want to ensure we are working with a wide range of people from different backgrounds, and with different experiences, through inclusive approaches. We want there to be no barriers for anyone being involved in research in the ways that work for them.
What we've done
We have launched a new funding call for community organisations and researchers to develop relationships and to focus on areas of research that are important to communities. This research will be evaluated and used to inform future improvements. The call will open for a second round of funding in August 2023.
Through our Race Equality Public Action Group, we have published the Race Equality Framework. It is a self-assessment tool which helps organisations and groups to improve racial equality in public partnerships in health and care research. We know that the Race Equality Framework is being used in 20 organisations and centres officially (and unofficially in many more), and a community of practice is being developed to support peer learning.
We have hosted conversations to develop people’s understanding of what’s involved in working with and valuing community engagement relationships.
Following the incorporation of public reviewers in the 2021/2022 funding round for NIHR Biomedical Research Centres, we also introduced this role into the 2022 Senior Investigator competition and the 2023 funding round for the Research Support Service. This is the first time public reviews had been provided to the committees in addition to those given by the Public Committee Members.
We have collected demographic data from public contributors across 15 regional networks to capture diversity and help increase engagement and involvement from populations that are currently not represented. Results will be shared later this year.
What we will do
- conduct equality impact assessments of current public contributor recruitment and capture diversity data for public contributors across the NIHR Coordinating Centres
- try different approaches to enable public contributors with diverse experiences to get involved with our work
- continue to promote the Race Equality Framework and further develop the community of practice
- continue to implement the ‘inclusive opportunities’ UK Standard for Public Involvement
Standards, processes and incentives
We want to ensure effective processes and standards are in place to support public involvement, and that we clearly articulate our expectations of meaningful partnership working.
What we’ve done
We are working to make payment of public contributors simpler and more consistent. In April 2023, we updated the new guidance on payment for public contributors to research, co-developed with the Health Research Authority and Health and Care Research Wales. The guidance aims to help researchers and public partnerships staff to overcome issues related to employment status and tax.
We have also continued to actively promote the benefits and use of the UK Standards for Public Involvement.
What we will do
- continue to facilitate the UK- wide partnership that developed the UK Standards for Public Involvement
- monitor how the Standards are being used and the difference they are making
- share useful learning and resources which helps others to use the Standards
- work to agree a single shared public contributor payment policy for the NIHR Coordinating Centres , which will be in use in 2023
- provide time in the funding application process to ensure researchers can work with public contributors to develop their proposals
- provide funding for partnership working at the start of the research process ensuring public contributors are supported within and empowered to contribute to the important discussions in our funding committees
Digital engagement
We want to make the most of connecting people through modern technology while making sure we do not miss people who have less technology access. We recognise that talking to communities and public contributors about how they would like to be involved is key to successful engagement.
What we've done
We worked with public contributors, researchers, web designers and those co-ordinating public partnerships in NIHR to co-produce a plan for improving the Learning for Involvement website. Our aim is to make the website the central hub for all things related to learning and development for public partnerships.
What we will do
- review our public partnership websites, including Be Part of Research and People in Research, to improve accessibility and make sure they are providing the best possible service
- explore ways to link these pages to make it easier for patients and the public to find the information they need
- see what we can learn from charities and community groups, to provide training and share best practice
- explore how we can bridge the digital divide and support those without access
Capacity building
We want to ensure that people have the right resources, knowledge, skills and confidence for effective partnership working. This means looking at how we can build capacity in involvement, for example through training, guidance and sharing learning. We want to ensure that NIHR understands how to best build and sustain relationships between researchers and community organisations.
What we've done
We have run learning and development events to support capacity building and increase understanding of health inequities. We have produced a standard induction for both NIHR staff and public contributors, to support public partnerships more effectively.
We are rolling out the NIHR’s Research Ready Communities programme that works with under-served communities to increase awareness of research and provide more inclusive opportunities.
Showcased learnings from regionally based projects that have tested approaches to developing successful partnerships with communities and the voluntary sector in a series of case studies on Learning for Involvement.
What we will do
- continue to look for solutions to challenges raised in surveys and research of the public partnerships workforce such as the Taking Stock survey
- look at ways to involve more public contributors in NIHR Boards and meetings, particularly those from diverse backgrounds
- signpost resources to people who are interested in getting involved in the future
Impact and learning
We want to ensure we can learn from what works and what doesn’t. We want to capture the difference our partnership working makes.
What we've done
Our immediate focus has been to deepen our shared understanding of what we really mean by ‘impact’ for public partnerships. We have built on the prior work to define this as “the changes, benefits, and learnings gained from the insights and experiences of patients, carers and the public when working in partnerships with researchers and others involved in NIHR initiatives”. This was co-developed with public contributors.
We have also run several events to explore the topic of impact, including a panel discussion exploring who should be involved in capturing impact and how this shapes approaches to evaluation and an event introducing the ‘Cube’ framework for assessing partnerships. The most recent event was about capturing impact from public involvement: a South West Peninsula example.
What we will do
- provide training and easy tools for collecting feedback, capturing impact and sharing learning
- work with public contributors to define what impact looks like to them and improve our partnership working from their perspective