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How we involve patients, carers and the public

Every day, patients, service users, carers and the public make a difference to health and social care research and our work. So much so, that our pioneering partnership with the public has become one of the hallmarks of NIHR and is considered to be world-leading.

No matter how complicated the research, or how brilliant the researcher, patients, carers and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more relevant and often more cost effective.

Our strategy

Our vision is for a population actively involved in and engaged with research to improve health and wellbeing for themselves, their family and communities

The NIHR Going the Extra Mile report sets out our ambitious 10 year strategy (2015-2025) for patient and public involvement and engagement (PPIE) in research.

Our strategic goals for 2025 are:

  • opportunities to engage and become involved in research are visible and seized by the public
  • the experience of patients, service users and carers is a fundamental and valued source of knowledge
  • public involvement is a required part of high quality research conducted by researchers and their institutions
  • public involvement is locally driven and relevant whilst strategically consistent with the NIHR’s goals
  • evidence of what works is accessible so that others can put it into practice
  • the NIHR has maintained its global presence and influence for working in partnership with the public

Our approach

PPIE in all that we do

Since NIHR was established in 2006, we have aspired to involve patients, service users, carers and the public in every step of the research process. We are now a recognised leader in public involvement and engagement (PPIE), with 100% of all our research and activities involving patients, service users, carers and the public in some way.

Each of our national coordinating centres involves patients, carers and the public in their work in funding and monitoring research, and we require that the researchers and organisations that we fund involve patients, carers and the public too.

We ensure that all the infrastructure - centre, facilities, institutions and networks - that we fund up and down the country involve the public in the work they do.

The NIHR Centre for Engagement and Dissemination provides coordination and thought leadership across the health and care system, establishing a culture that engages with patients, service users, carers and the public to make health and care research representative, relevant and ready for use

PPIE in how we fund research

The NIHR carries out a number of activities with patients, carers and members of the public to identify what research should be commissioned directly by NIHR, including supporting James Lind Alliance Priority Setting Partnerships.

The public are involved in reviewing and making final funding recommendations on commissioned research proposals to the NIHR, as well as those independently submitted from researchers.

We require researchers who submit applications for NIHR funding to demonstrate patient, carer and public involvement and engagement in the development of and throughout the research study. We also have the same requirements for researchers who hold our training awards.

We provide PPIE advice to researchers through our Research Design Service, and offer small grants to help researchers and healthcare professionals develop innovative PPIE ideas.

PPIE in research we fund

Researchers funded by the NIHR have patients, carers and the public represented in their groups that oversee the running of the study. PPIE is regularly reported and monitored through the duration of each research study.

Our Patient Research Ambassadors are patients, service users, carers or members of the public who are enthusiastic about health research and are willing to communicate that to other patients, carers and the public, as well as healthcare professionals.

PPIE in how we share knowledge

The NIHR Journals Library stores final reports of NIHR-funded research, which include information about PPIE in the research study.

NIHR Evidence provides summaries of research to help patients to make evidence-based decisions about which treatments and practices are most effective. Our PPIE work is frequently published in peer reviewed journals such as the BMJHealth Expectations and the Journal for Research Involvement and Engagement.

PPIE in our national coordinating centres

Our national coordinating centres involve patients, carers and the public in their work; for example, supporting people to join our funding committees. Find out about how we involve patients in our national research funding activities.

Our governance

A cross-NIHR Programme Board coordinates participation, involvement, and engagement-related activities. The Programme Board membership consists of public contributors, researchers, healthcare professionals, and people who lead participation, involvement, and engagement-related activities across the NIHR coordinating centres.  We are currently reviewing the Board's terms of references; please check back for updates.

PPIE in our strategic work

We have a number of PPIE Advisory Groups that provide advice and get involved in the implementation of our work.

Improving PPIE

We run and contribute to a number of activities to improve the quality of patient and public involvement and engagement in health and care research - nationally in our coordinating centres; in the centres, facilities, units and schools that we fund; and across the board with other funders.  Read our latest review on patient and public involvement and engagement (PPIE) at the NIHR.

Improving how we do PPIE

We have a programme of continuous improvement, carrying out evaluations to assess the impact of our work. In response to an independent audit of our strategy in 2018, we will aim to:

  • strengthen governance and oversight of PPIE across NIHR
  • improve collaboration and ownership at coordinating centre level of key strategic outputs
  • plan for the next phase of implementing our Going the Extra Mile strategy, including a formal framework of key accountabilities across the Coordinating Centres and a consistent approach to agreeing and signing off on individual and collective plans
  • improve internal and external communications including feedback to partners but, most importantly, to patients, carers and the public.

What people think of our PPIE

We carried out a survey of members of the public involved in our work between December 2018 and January 2019. The survey results highlighted our strengths as well as areas key areas for improvement:

  • our public involvement community is strong, supportive and highly motivated
  • it is highly focused on improving research to produce better outcomes
  • there is a lack of diversity in the community in terms of age and background. our continued ability to attract new people is, however, a strength.
  • public contributors are fulfilling a variety of roles in keeping with our definition of ‘active involvement’
  • generally NIHR gets good satisfaction ratings from people but experiences are varied and point to the NIHR needing to develop model approaches.
  • importantly the vast majority report that they feel they make a difference and their contribution is valued
  • the survey identifies clear improvement areas for the NIHR particularly around feedback, communications and acknowledgement
  • the survey points to public contributors having strong local relationships with researchers and institutions but that NIHR is a somewhat distant partner. 

Our strategy for 2019-2025 will be to continue to implement our Going the Extra Mile strategy, while ensuring that we address the findings from both the audit and the public feedback survey.

UK Standards for Public Involvement in Research

We are part of a UK-wide partnership that has developed a set of UK Standards for Public Involvement in Research. The aim of the standards is to improve the quality and consistency of public involvement in research. Read more about the UK Standards for Public Involvement in Research.

Supporting high quality PPIE in our centres, facilities, units and schools

We fund more than 100 centres, facilities, units and schools that support early and applied health and social care research. Each year these organisations report to us on their progress and how they’re undertaking PPIE.

We share the PPIE sections of these annual reports to support and promote the sharing of knowledge, learning and good practice across the NIHR and beyond. If you would like a copy of a 2017/18 report from part of our infrastructure, please email the PPIE team at the NIHR Central Commissioning Facility.

We welcome feedback on these reports. For example, it would be helpful to us to know who is reading them, whether readers find them informative and useful, or not and what we could do to improve.

Stay up to date

If you want to know more about opportunities to participate in research or become involved in supporting the development of research, whether for yourself or on behalf of others, then please connect to the following social media accounts.

Twitter avatar

twitter logoTwitter: Be Part of Research

facebook logoFacebook: NIHR Facebook

You can also get the latest  learning, events and advice on engaging patients, service users, carers and the public in health and care research at @NIHRinvolvement.

Latest blogs for Patients, Carers, and the Public

Making Research Happen in a Pandemic

Professor Ramesh Arasaradnam and clinical trial coordinator Chris Bradley of the University Hospital Coventry and Warwickshire (UHCW) reflect on the challenges COVID-19 has brought to NHS research. In this blog, they stress the importance of continuing to make research happen.

Front line of the NHS is fertile ground for the fresh thinking that benefits us all

The new Programme Director of NIHR Invention for Innovation (i4i), writes about his new role and how the UK has an opportunity to use the experience of healthcare professionals to become a creative leader in research science.

Multiple long-term conditions – making sense of the evidence

Candace Imison, Associate Director at the NIHR Centre for Engagement and Dissemination, reflects on multiple long-term conditions, the existing evidence and what it offers and the evidence gaps that are left to fill.

Achieving closure - What happens to older people and staff when care homes close?

A care home for older people may close for a number of reasons, with different approaches taken across the country. Prof Jon Glasby writes about how his new programme of research will help to understand the national picture and develop good practice to ensure that closures are managed as well as possible, and potential negative impacts for residents and staff reduced.

Young adults collaborating with researchers to make sense out of the pandemic

Annie Keane, from patient involvement group Vocal, and teenager and research participant Alma Jbeili, write about how an innovative comic project Planet DIVOC-91 aims to address the lack of focus on young people’s concerns and experiences in the wider public discussions about the COVID-19 pandemic.