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Patient and Public Involvement and Engagement Resource Pack

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Published: 09 August 2022

Version: 1.0 August 2022

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Patient and Public Involvement and Engagement Resource Pack for applicants to the NIHR Senior Investigators Competition.

Introduction

NIHR Senior Investigators are among the most prominent and prestigious researchers funded by the NIHR and the most outstanding leaders of applied health and social care research within the NIHR community. Senior Investigators are fundamental to the NIHR; they provide visible leadership and support the strategic priorities of the NIHR. The aim of this programme is to ensure that those within the Senior Investigator College contribute significantly to NIHR as senior leaders, and act as ambassadors and role models for the NIHR. There are up to 200 members of the NIHR College of Senior Investigators, selected through a process of annual competition with advice from an independent expert panel. The intention is to maintain numbers at this level through continuing annual rounds of competition.

This resource pack was co-created with members of the NIHR PPIE team, public contributors and NIHR Senior Investigators to provide extra guidance on PPIE for prospective applicants for the Senior Investigators Competition.

Foreword

Over the last decade there has been a sea change in attitudes amongst investigators to patient and public involvement and engagement in research. Increasingly researchers are recognising the value of patient and public involvement and engagement, and no longer paying lip service to it. This has led to improvements in the planning, delivery and dissemination of research studies and everybody benefits as a result.

Given the importance of patient and public involvement in research, the NIHR Senior Investigator award competition asks applicants to give specific examples of how they integrate PPIE into their research; how they support capacity development for PPIE, and how they demonstrate leadership in PPIE. However, some applicants struggle to give the best account of themselves when completing this part of the application form. To help, we have produced this resource pack to give investigators a better idea of what committee members with specialist knowledge/expertise in PPIE are looking for in a high-quality Senior Investigator application.

We have provided definitions of patient and public involvement, engagement and participation in research, and have outlined the types of things that committee members are looking for when assessing applications. Importantly, we have identified specific examples of how four Senior Investigators are championing and integrating PPIE in their work and we are grateful to the NIHR Senior Investigators who have kindly allowed us to share these examples.

I would like to thank the NIHR PPIE team and public contributors for the excellent work they have put into co-creating this resource pack; if you are applying for the NIHR Senior Investigator award, we hope you find it useful.

Professor Tony Avery, OBE
NIHR Senior Investigator
Member of the NIHR PPI Programme Board

What is public involvement in research?

NIHR is committed to ensuring everyone benefits from research. Public involvement is important, expected and possible in all types of health and social care research. This not only includes scientific research in laboratories, but also research into health and social care. Research provides evidence about what works best. Patients, carers, people who use social care services and health and social care professionals all use this evidence to make decisions about treatments and care.

When the public gets involved in research, they work alongside researchers to help shape:

  • what research gets done
  • how it’s carried out
  • and how the results are shared and applied in practice.

NIHR defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

When we use the term ‘public’, we are including:

  • patients and potential patients
  • people who use health and social care services
  • carers
  • people from organisations that represent people who use services.

Engagement

Where information and knowledge about research is provided and disseminated. Examples of engagement are:

  • science festivals open to the public with debates and discussions on research, open days at a research centre where members of the public are invited to find out about research.
  • raising awareness of research through media such as television programmes, newspapers and social media.
  • dissemination to research participants, colleagues or members of the public on the findings of a study.

Participation

Where people take part in a research study. Examples of participation are:

  • people being recruited to a clinical trial or other research study (e.g. to test the efficacy of a new treatment).
  • completing a questionnaire or participating in a focus group as part of a research study.

Involvement and Engagement of, and Participation by, the people who use and care about NHS services, leads to a greater understanding and better ability to respond to their needs; including those people who have the poorest health. This helps improve access to services and reduce differences in health in different communities and to see things through the eyes of those who use services

Senior Investigators: Leaders for patient and public involvement in research

The section below presents examples of how Senior Investigators involve patients and the public in their work. It is aimed at: 

  • providing Senior Investigator competition applicants with clear examples of patient and public involvement practice at the level of Senior Investigator
  • encouraging all NIHR Faculty members to integrate patient and public involvement into their own research career development
  • giving patients and the public an insight into the ways Senior Investigators involve people in their work

We are grateful to be able to share these examples thanks to the following NIHR Senior Investigators; Professor Anthony Redmond, Professor Russell Viner, Professor Clare Bambra and Professor Michael Patrick William Grocott.

Professor Michael Patrick William Grocott says “...In my own research all studies have patients directly and actively involved as trial steering group members contributing to ongoing study development and management. As standard practice, for more than a decade all our clinical study grants (NIHR and other funders) have had patient(s) as co-applicant(s). This has resulted in modification of complex interventions (e.g. increased duration of training, “buddy training”), choice of primary outcomes (e.g. disability adjusted survival, days alive out of hospital), consequential guidance about integration of study conduct into clinical pathways, and collaboration on dissemination of study outputs. As director designate of the Southampton NIHR BRC I have embedded patient and public review into our proposal development process for the whole BRC and for individual themes. For this application (2022-27), we have undertaken a series of fifteen BRC-wide and theme-specific meetings with our newly established "BRC Community Council" of patient/public representatives. I have championed development of the new Southampton Centre for Research Engagement and Impact bringing together PPIE, EDI and Communications within one team.”

Professor Russell Viner has a long-standing relationship with the Young Research Advisor (YRA) group of the National Children’s Bureau, having worked with the group for > 10 years in the Children’s Policy Research Unit and the Obesity Policy Research Unit, and contributed over time to improvements in ways of working with researchers. The work of the Lancet Commission for Adolescent Health (2016), of which he was a co-founder, initiated new ways of participation in international activities for young people from a range of countries. As part of the Advisory Board for a planned new MRC Adolescent Health Cohort Study, successfully advocated for close involvement of young people in development of the plan for the cohort and led a number of the PPIE sessions. Prof Viner’s NIHR grant examining the impact of COVID-19 on children and young people’s healthcare has an initial work package consulting with children, young people and families on their experiences of disruption, with further analytic work packages directly planned from the outputs of this work package. He successfully argued for young people to be coauthors on outputs from the early parts of his work from his recent NIHR grant. He supported early career researchers to work directly with young people to lead these publications.

In the past five to ten years, Professor Anthony Redmond and his team have spoken at a dozen or so “Meet the researcher” events. They have embraced the PPIE agenda through support of initiatives such as the “OK to Ask'' days, providing stands and staff in waiting areas, and participating in school outreach days and events such as the Leeds originated “Be Curious”, During the setup of the seven-Institute Arthritis Research UK Centre for Sports Exercise and OA Prof Redmond was the lead academic on developing the national PPI protocol and was a named author on the final PPI policy document. As a senior member of the BRC and Institute, he contributed regularly to (the Institute’s) PPIE meetings personally, as well as ensuring that junior staff were committed to the concept and that they present their own ideas and progress. Internationally, he has been a champion of good PPIE and increasing PPIE capacity in the EU. As a Eular executive member Prof Redmond was a vocal advocate for EU nations to improve PPIE activities in line with UK developments, including presenting formally on the topic at the 2017 Eular congress and publishing an associated abstract (Redmond 2017). Within their large EU-funded LifeLong Joints project he pushed for better PPIE than partners in other nations were used to, and Leeds in 2015 hosted a day conference with a range of international speakers and targeted specifically at patients who had participated and the public, to engage with the project and its impacts.

As part of her co-leadership of the national NIHR School of Public Health Research health inequalities theme, Professor Clare Bambra oversaw the establishment of the Equal England Health Inequalities Knowledge Exchange Network. This includes a PPIE panel with over 50 members of the public from deprived communities who co-produce the research. Prof Bambra believes that PPIE should always be properly resourced and has thereby followed NIHR guidelines and, as part of her co-leadership of the ARC Health and Care Inequalities National Consortium, ensured 5% of the budget was allocated to support consortium PPIE activities. PPIE is also embedded in individual consortium projects. In her programme of work on inequalities in COVID-19, Prof Bambra has had active involvement from members of the public from communities with higher-than-average rates of COVID-19 (including ethnic minorities and deprived neighbourhoods). This included insights from ‘experts by experience’ drawn from the Equal England Public Panel. They have helped in co-designing aspects of the programme, analysis, governance, data interpretation and dissemination. Other projects have also included members of the public and/or community representatives as co-applicants and co-authors. Similarly, her current project on understanding the north south health divide is being supported by members of the Equal England Public Panel. 

Guidance for approaching PPIE in your application

Involvement and engagement of patient, public and service users is vital in the NIHR plan to improve the health of our nation.. PPIE plays an integral role in the SI awards.

Part of the decision process for awarding SIs will involve your application being reviewed and commented on by committee members with specialist knowledge/expertise in PPIE. They will look for strong evidence of PPIE in your application and allocate a score based on this, this is then collated with peer and scientific reviews to give you a final score.This section provides further guidance on how to approach the PPIE part of the application. It needs to be read alongside the main guidance to applicants.

Your application

There is a section on the application form specifically for you to demonstrate how you have included and involved patients, public and service users in your research:

3. Patient, social care users and public involvement and engagement in research (PPIE)

Significant track record of effective PPIE in research including leadership and capacity development for PPIE.

Applicants must provide a minimum of one example of their contribution to PPIE activity in each of the following areas:

  • How they integrate PPIE into their own research.
  • How they support capacity development for PPIE.
  • How they demonstrate leadership in PPIE.

Where centre-level activities are provided, the applicant should describe the role they played in each example. Examples could include but are not limited to:

  • leading the dissemination of good PPIE practice in local institutions and structures and using evidence of PPIE impact nationally,
  • championing the adoption of the UK standards for public involvement within their institutions and across NIHR structures,
  • ensuring that research collaborations are championing equality, diversity and inclusion, offering opportunities for involvement to people who do not traditionally get involved in research or decision making,
  • demonstrating how they have positively impacted research to support and advance equality of opportunities for people with relevant protected characteristics including age, disability, gender, marriage and civil partnership, pregnancy and maternity, race, religion or belief, sex and sexual orientation, and
  • supporting PPIE leads and early career researchers within their institutional research ecosystem and spheres of influence ensuring a commitment to equality, diversity, and inclusion (this could be through mentoring and/or coaching).

When completing this part of your application it is really important for you to demonstrate what you have done and what it has achieved in a clear and concise manner. When giving examples showing best practice, innovative and inclusive models for PPIE are embedded within the research/centres they are leading on, it is useful to consider how and when PPIE was conducted, who was involved/engaged and why, how was the PPIE beneficial and what was learnt in the process.

Another point to highlight is to evidence your unique role or ownership of the PPIE narrative in the examples provided.

Whilst participation is a very important part of including the public in research, this question would like you to focus on Involvement and Engagement. However, examples of involvement or engagement activities which resulted in better/increased participation can be included.

We hope you have found the information in this resource pack useful and that it can support you in your application to the NIHR Senior Investigators Competition.

List of abbreviations

NIHR- National Institute for Health and Care Research

PPIE- Patient and Public Involvement and Engagement

SI(s)- Senior Investigator(s)

BRC- Biomedical Research Centres

MRC- Medical Research Council

With thanks to

NIHR Senior Investigator: Professor Tony Avery
Public members: Alero Dabor, Steve Edgar, Phillip Hurst, Angela King
PPIE team members: Sarah Betts, Marcia Green, Razina Hussain, Yvonne Anderson, Saumu Lwembe