Capturing the Contribution

Preface

I had no idea what public involvement in terms of health research and development was all about but stumbled across it by accident. It has been the best accidental stumble I’ve had.
Hearing researchers say that my input and feedback on the design of their research has been beneficial for them to be able see their research from a different angle (especially in terms of how far their research takes into account meeting the needs of diverse groups of people) gives me some hope that we will finally start to see health inequality gaps narrowing. To have the opportunity to add richness to research when it is still in the design phase has been a valuable process as I feel that my voice is able to make a meaningful difference.
But my unique perspective (as a British-born mother of African-Caribbean heritage) is just that - unique to me. There are many who haven’t been as ‘lucky’ as me to have had such a fortunate ‘accidental stumble’ as I did. The world of health research is missing out on so many other unique and valuable perspectives in terms of potential public contributors from all backgrounds and walks of life; to help shape the research and provide a panoramic as opposed to linear perspective in the first place. Diverse communities are readily called upon to be the ‘researched’ but nowhere near as often to be the co‑creators and designers of research. Creating equitable access into public involvement opportunities is vital to ensure that health research is shaped with the benefit of varied perspectives; to ensure research is meeting the needs of all our diverse communities and the ever ongoing discussions and talk of eradicating health inequalities is no longer just ‘talk’.
Cecily Henry, 2021

Introduction

Public involvement is a requirement for all funding applications giving emphasis to the phrase ‘nothing about us, without us’.
From the humble beginnings of explaining what that actually means we’ve come a long way in a short space of time.
For us, the People are Messy roadshow was the start of a big push to strengthen the public involvement role and to reach out to people and encourage them to get in involved in research. Our East Midlands screening of the show with discussions attracted over 100 people from all walks of life. As a result of the event, our RDS recruited 12 new public contributors to support our service.
Together with other NIHR organisations in the East Midlands, Sharebank was created as a way to efficiently share resources and to put on training events for public contributors and researchers. Our new cohort were the first to attend the ‘introduction to research’ training sessions.
Initially, public contributors were engaged to talk to researchers about their experiences either as patients or carers. They were asked to comment on the burden and priorities that needed addressing from their point of view. But as time went on it was recognised that their skills could be used much more widely and so we used part of the NIHR’s public contributor course ‘How to review research documents from a patient and public point of view’ to upskill our team.
This training opened up lots of opportunities for our public contributors as well as giving them the confidence to discuss applications alongside RDS EM staff in meetings.
Today we have a confident, competent team of public contributors taking part in all aspects of the RDS EM service from reviewing applications, and being part of practice interview panels to being part of an advice team providing support to researchers at online events. Internally they support the RDS EM to revise documents, develop toolkits and take part in our staff development sessions and away days.
They are truly an asset to the Research Design Service East Midlands and with this document, we’d like to both capture and celebrate their contribution to research design.

What does the work of a public contributor look like?

 Events
Public involvement is always a main feature of any event that we deliver and where possible we involve a public contributor as part of the planning committee.
In 2021 we put on an event around the NIHR’s Invention for Innovation (i4i) funding programme. This is focused on technical and commercial development of new healthcare technologies and perhaps at first glance felt a bit alien for public involvement input. We were however keen to showcase how vital public involvement is even in such technical and commercial projects. A whole session of the event seminar series was dedicated to public involvement and as part of that our young person’s advisory panel (YPAG) presented on how they were involved in every step of the research process. You can view the session on our YouTube channel i4i Session 1: Patient & public involvement and stakeholders - YouTube
In the days when we ran face-to-face beginner’s workshops, public contributors would work as part of a team with researchers on the course to develop small practice research projects, addressing the research question, background justification, team composition and public involvement plans. They’d offer their lay perspective on the projects being developed and would take part in the group presentations and panel QnAs.

Face-to-face support
In addition to delivery of event content our public contributors are also active team members in supporting early stage research projects. Most online events now offer individual project pitch sessions attended by the research team, RDS EM advisers and a public contributor. The aim of the session is to allow researchers to present the key points of the research idea including public involvement. The pitch is followed by whole group discussions and researchers leave the session with some agreed action points to help further develop the project.

Reviewing applications
In RDS EM we run monthly application review panels to look at near complete applications prior to submission. Each application has an RDS EM adviser and public contributor detailed review; together they lead the discussion with the wider panel to agree feedback for the research team. Public contributors not only complete a detailed review of one project but they also read and discuss the other projects presented at the panel. This provides good peer to peer learning among public contributors but also good reciprocal learning opportunities with RDS EM advisers.

Practice interviews
Short listed fellowship candidates are offered practice interviews in front of an RDS EM panel which includes a public contributor. This provides an important and often unique opportunity for candidates to run their presentation past public members and field their questions. Prior to the practice interview the public contributors will have read the shortlisted application and together with RDS EM advisers agreed some questions and running order.

Research ambassadors
Before Covid our research ambassadors were active in attending national events representing RDS EM and delivering presentations to help promote the importance and awareness of public involvement. Online this work has continued in the form of being part of presentations to launch and promote our new equality, diversity and inclusion toolkit.

Governance
As time has gone on public contributors have become an integral part of all RDS EM activity including strategic planning. We have two experienced public contributors sitting on our Regional Advisory Board sharing their views and discussing the future direction of RDS EM work. Part of their role includes commenting on our annual report and supporting the milestone setting for the following year.

How do we support our public contributors to take on these roles?

Public contributors are supported in each of the roles by our public involvement lead. We also have a training and shadowing programme in place to bring on new public contributors as needed in the different roles with more experienced public contributors acting as mentors when required.
Our public involvement lead supervises the group and talks through the preparation, delivery and feedback from activities. As time has gone on other RDS EM advisers have developed strong connections and are happy to share feedback and outcomes directly with the public contributors.
In line with our RDS EM staff, public contributors also need to continually develop their skills to adapt to changes in the funding requirements. It has been our policy in the last couple of years that we include public contributors in any staff development activities and away day opportunities. Indeed recently public contributors have been an integral part of developing both resources and training around new equality, diversity and inclusion requirements.
We are very aware that as public contributors develop their skills, they may look for opportunities to join research teams to deliver a research project close to their heart. We’ve had two such instances recently where public contributors have joined a team as a co-applicant and they have been supported in that work both pre and post award by RDS EM.

The importance of our public contributors

In RDS EM the role of public contributors has grown and strengthened in scope, drawing upon not only their lived experiences as a patient and carer, but the raft of skills, insight and experiences they bring from both professional and personal experiences. In the words of one RDS EM adviser, “I think we’ve moved away from what their role used to be - it might have been lived experience, it might have just been a lay perspective on looking at something whereas now they are becoming like a lay adviser”. Public contributors are the very ones who are able to “see the project from a practical point of view as opposed to as a theory”.
Mindful of individual interests and preferences, RDS EM is at the forefront of expanding and evolving the diversity and contribution of public contributors in all aspects of the organisation, including:

• • Regional advice sessions, review panels, practice interviews;
  • Research ambassador roles;
  • Co-facilitators/presenters involved in national and regional workshops and seminars;
  • Governance positions at both regional and national level.

Such a variety of roles has not only been welcomed by RDS EM advisers but also by the public contributors, who cite such benefits as:

• • Greater opportunities for individuals to learn, grow and develop, both personally and professionally;
  • Acquiring new skills, e.g. investigative, interviewing, facilitation, public speaking;
  • Being respected and valued;
  • Improved self-esteem and confidence;
  • Constant meaningful work aiding mental alertness and wellbeing;
  • Opportunities to speak to different researchers and to understand different perspectives.

From our series of interviews with RDS EM public contributors and advisers, and researchers who have received RDS EM public contributor support regarding their applications or (practice) interviews, a number of common themes have emerged:

The public involvement perspective

RDS EM public contributors are key players in the trajectory of public involvement in research. Not only do they contribute a public involvement perspective at the research design stage, they also have the skills and knowledge to enable meaningful public involvement in the conduct of the research, “The public contributor has an important role of making sure that patients and the public have been involved at all stages of the project life…” (adviser). Involving the public in research in this way is important for both moral reasons, so that “a study is more likely to be designed and conducted in a way which is acceptable to the public” (public contributor), and pragmatic reasons, for example, “Making sure that the treatment delivers what it is intended to deliver and that the intention is put in terms that really benefit the patients, so that it is monitored in a way to reflect that” (adviser).
Advisers and researchers alike place great value on the “fresh perspective” that public contributors bring to reviews and practice interviews: “it’s almost the left field, out of the box sort of thinking…a completely different perspective to ours” (adviser); “It helps me think outside the ‘box’. I am able to get an idea of how the public are likely or able to understand the project I would like to carry out” (researcher). Such a public involvement perspective explores the application not in terms of a clinical, medical, scientific exercise but for its real-world applicability, “making sure that everything that we do is grounded in what is of relevance to and will improve things for the public and would be acceptable to the public and not harmful” (adviser).

Impact

The impact of public contributor involvement in the work of RDS EM is far-reaching, and includes:

• • Improving the quality of applications, e.g. public involvement is meaningful, not tokenistic; the research is designed in a way that is acceptable to participants; the plain English summaries are jargon-free and easy to understand; public involvement is realistically costed and budgeted; the research findings are communicated in ways that are appropriate and accessible to participants at the end of the study; participants have a better experience of the research, and the research is appropriate and of benefit to the intended user. As one adviser points out, the impact of public contributor involvement can range from changes being made to specific areas of the application to the whole “application being heavily revised”.
  • Public contributor involvement also impacts on the individual adviser, researcher and public contributor. The legacy of shared learning and new ways of thinking not only affects personal and professional development, “[They] completely changed my approach…” (researcher), but also influences the organisational culture of RDS EM.

Value

Whilst literature shows that there is a lack of research into public contributor involvement in research, RDS EM advisers are adamant that in their experience the work of RDS EM public contributors is of immense value, “standing up both for patients in the study and for patients in general who might receive the proposed intervention” whilst “challenging things that otherwise might be taken for granted”. Public contributors “can express the novel approaches that can trigger something different within the application”. This is mirrored in the feedback from researchers in regard to public contributors’ involvement in practice interviews and reviewing research funding applications, “… having a public contributor is immensely helpful, it brings to the fore the purpose of the research being planned - for patient benefit”. “Having a public contributor highlights where my views are coloured by what I perceive is feasible and possible … ensuring I reflect on and improve my plans”. Researchers emphasise the benefits of being challenged (constructively) by public contributors lacking “preconceived biases based on earlier work in the area”, especially when you are a “clinician who sometimes thinks I know what my patients want”. After all, as one of the researchers interviewed for this project states, “They are the intended users of the proposed system. They know what they need better than any researcher”.
However, “It’s not just the impact of public contributors on the strength of the funding application or the proposal but it’s also the learning that takes place and the knowledge that the applicants gain, which they can take forward to future work. It’s not just about the here and now but it’s that legacy of public contributor involvement” (paraphrasing adviser).

Equality, diversity, inclusion (EDI)

The contribution that public contributors make to the work of RDS EM is enriched by the diversity of their lived experiences, characteristics and perspectives – essential components of meaningful patient and public involvement. “So many of our public contributors excel in automatically thinking about equality, diversity and inclusion…there’s a lot of awareness of the kind of constraints and barriers that as researchers we impose on participants, particularly around socioeconomic status and around ethnicity and culture, and sometimes thinking about the gender dimensions of research and about age. I think that public contributors can much more readily identify those issues even more than advisers can” (researcher). Whilst it is clearly recognised that public contributors play an important role in upholding the NIHR equality, diversity and inclusion requirements for research, it is also acknowledged that equality, diversity and inclusion is “a role of everyone in RDS, so it’s not just left in the hands of the public contributor but it informs all parts of the process” (researcher).
However, diversity is complex; people are complex. An individual cannot be defined simply by one particular characteristic, be it age, ethnicity, gender, sexuality, disability, socio-economic status, religion and so on. “Whilst we make sure that we have a broad group of public participants…I don’t think we try to pigeonhole public contribution and I don’t think we should” (adviser).

So, what motivates RDS EM public contributors to be involved?

• • “I want to help and I just sometimes think that clinicians and researchers can’t always see the human element” (public contributor).
  • “…when you are a mum with children and you just think I don’t want them to be facing the same kind of inequalities that we have been facing for years and years” (public contributor).
  • “… I feel that I am almost representing the public at large. I think that it’s absolutely essential and important to us - the public at large” (public contributor).
  • “…it is good to share your experience – it’s always like sometimes people don’t know; sometimes nobody is coming forward to say these things and nothing has been done. People know that something is missing but they need to identify what is the gap and what is the requirement – so that’s the motivation” (public contributor).

The project has highlighted the importance of skilled, experienced public contributors for the work of RDS EM and the research community, which inevitably leads into how we go forward: “One of my concerns is losing experienced public contributors …it’s not like you go to college and get a degree in public contribution - it is an experience. You are an experienced person but then how can you train someone that can replace you later” (adviser). But that is the subject for another project and time.

The following images summarise what it means to have a public contributor included in the advice that is offered from the perspective of the public contributors, RDS EM advisers and researchers. The comments for each group are not always direct quotes but sometimes compiled statements to illustrate the points made.

Future

As with all things, public involvement and engagement is constantly evolving and as an organisation we need to make sure we’re flexible and responsive to need. Our work on equality, diversity and inclusion has shown that our organisation is more than capable of handling this but there is still much work to be done. We’ve moved historically from making sure public involvement is included to making sure it’s meaningful, and now the work continues to develop more innovative public involvement. As part of that effort, we will be exploring community engagement further and bringing research to underserved communities. To ensure we continue to progress, we’re also recruiting new public contributors to ensure that we have a diverse base from which we can offer advice.
Many thanks to our public contributor group for all the work they do to support RDS EM and researchers and if you are interested in joining our team please get in touch.

In memory of Pamela Campbell-Morris

Sadly in 2021 one of our public contributors passed away. Pamela Campbell-Morris was a public contributor with RDS EM for 5 years; she was an inspirational and charismatic person and is hugely missed. Pamela was an excellent public speaker who was not afraid to ‘call it out’. She continually challenged the use of the phrase ‘hard to reach communities’ and stated instead that some communities were either ‘easy to ignore’ or ‘seldom heard’. She worked tirelessly within African-Caribbean communities, supporting families and community organisations on a range of issues. Pamela passionately advocated the inclusion of African-Caribbean communities in research through the employment of meaningful and ethical community engagement strategies. To this end, she worked collaboratively with RDS EM, devoting her time to support our colleagues in RDS EM and researchers. In 2020 she gained recognition for her work, being awarded “Outstanding Black, Asian, Ethnic, Minority (BAME) Female Leader of 2020” at The Women’s Awards – East Midlands.
Her work with RDS EM has also had a lasting impact on the early career researchers she supported in our workshops. Here one researcher talks about the impact that Pamela had on his attitude to public engagement in research:
“I am deeply saddened by the news of Pamela Campbell-Morris’s passing. I first met Pamela at an NIHR workshop on public engagement where she discussed the organisation of domino tournaments to engage with African-Caribbean men, improving the education and importance of prostate cancer screening. Her work had a profound effect on my attitude towards the use of public engagement to improve research. Pamela kindly offered sage advice for my own research projects and funding applications which I believe was instrumental in my successes. She will be sorely missed by myself and all that had the pleasure of knowing her. My condolences are with her friends and family.” Paul Bird, Clinical Scientist
As already mentioned, Pamela was particularly good at articulating the need for community engagement, an area we plan to continue to promote and develop in our future work at RDS EM.

Acknowledgments

This report was developed by Louise Halbert, Janet Jones, Naina Patel, and Pam Rees on behalf of the NIHR Research Design Service East Midlands (RDS EM).
We are extremely grateful to the public contributors and RDS EM advisers who took part in our interviews and the researchers who took the time to complete our questionnaires.

Created: 25 May 2022