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 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
PPI 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, 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.
We fund INVOLVE to support researchers, PPIE professionals and patients, carers and the public to effectively work together to produce world class research.
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.
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.
Our national coordinating centres publish annual plans for how they involve patients, carers and the public in their work; for example, supporting people to join our funding committees. They also publish annual reviews that report on their PPIE activities against the UK Standards for Public Involvement in Research.
The NIHR National Director for Patients, Carers and the Public, Simon Denegri, is the lead for all PPIE activities at the NIHR and oversees implementation of the Going the Extra Mile Strategy.
Simon chairs the PPIE Senior Leadership Team, ensuring NIHR-wide cohesion and coordination in PPIE activities across NIHR coordinating centres.
Our PPIE Senior Leadership Team:
Simon Denegri, NIHR National Director for Patients, Carers and the Public in Research (Chair)
Alison Ford, Head of Engagement, NIHR Dissemination Centre
Beth Allen, Senior Manager: Impact, Intelligence, Engagement and PPIE, Department of Health and Social Care
Jon Cole, Assistant Director PPI and External Engagement, NIHR Evaluation Trials and Studies Coordinating Centre
Judith Williamson, Public Member
Krishna De, Assistant Director, Communications, Involvement and Development, NIHR Academy
Laurie Oliva, Assistant Director for Patient Involvement and Engagement, NIHR Clinical Research Network
Sabeena Subba, Assistant Director for Patient Involvement and Engagement NIHR Central Commissioning Facility
Tina Coldham, Chair of NIHR INVOLVE
Una Rennard, Public Member
Wendy Baird, Director, Research Design Service Yorkshire and Humber
Zoe Gray, Director, NIHR INVOLVE
The Senior Leadership Team develop and oversee implementation of annual strategic plans, which are based on our Going the Extra Mile PPIE strategy, and wider developments in the research and PPIE community. Read our 2018-2019 strategy.
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.
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 them. Please email your comments to the PPIE team at the NIHR Central Commissioning Facility.
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.
We fund INVOLVE, a national advisory group to support active public involvement in NHS, public health and social care research. You can follow INVOLVE on:
Dr Alison Foster is an Academic Clinical Research Fellow Registrar in Clinical Genetics in the Institute of Cancer and Genomic Sciences at the University of Birmingham. As chief investigator of The Phenotyping of Overgrowth Disorders (POD) study she explains how a better understanding of rare and complex disorders can improve care for patients with rare disease.
The UK Standards for Public Involvement aim to help researchers and organisations climb to lofty heights in patient and public involvement and engagement in research. Bella Starling outlines her experience in testing the draft standards - how the standards informed practice in Manchester, and how practice in Manchester informed the standards.
Research nurse Angus Sturrock shares a moving experience of how an aspiring artist's outlook on life was transformed through joining a clinical trial, aiming to improve mental health treatments.
The NHS collects billions of data points from patients each year, but using this routinely collected data in health research is a challenge. Jamil Mayet, Amit Kaura, Ben Glampson and Dimitri Papadimitriou outline how the NIHR Health Informatics Collaborative is making such data available and the collaboration’s first big research success in heart attacks.
Dr Pippa Corrie, NIHR Clinical Research Network National Specialty Lead, reflects on how patient involvement, a diverse portfolio, innovative precision medicine, and trainee research collaboratives have revolutionised changes in cancer research. Her blog marks World Cancer Day.
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