July 11, 2022
By Eleni Chambers, Lay Research Advisor and Public Co-applicant; Diane Fox, Research Officer at PSSRU; Lisa Richardson, Public Involvement and Engagement Manager
Patient and Public Involvement (PPI) is a requirement when applying for nationally competitive research funding in health and social care research. Much has been written about different approaches to and the impact of PPI in a wide variety of funded research endeavours. However, the involvement journey may start much earlier, which has led some to write about the variety of roles and value brought by involving patients and the public at the pre-award stage, including the potential to improve the project design and funding application. In this blog we’d like to shine a light on three different perspectives of PPI at the stage of developing bids. A public co-applicant, a researcher and a public involvement manager reflect on some of the highlights and challenges they have experienced and offer ideas to overcome these.
Public Co-applicant experience- Eleni
Whilst working as a lay research advisor for the Personal Social Services Research Unit, at the University of Kent, I carried out a fast track review of the lay research summary for a project proposal, this was the first I heard of this new project. I was pleased to receive detailed feedback from Diane, showing the changes made as a result of my comments. This was a positive start to my contact with the researchers on the study!
A couple of months later I heard that their first stage application had been successful and was invited to review the second stage. I had a telephone conversation with Diane in which she outlined some of their initial ideas. It seemed that the involvement could be improved by having a public co-applicant on the bid so I put myself forward. I’d had previous experience of being a co-applicant on other studies and it was clear to me that this would strengthen the application. Being a co-applicant may not be feasible or desirable for all lay research advisors though, particularly those new to research or involvement, or if you’ve never been a co-applicant previously and don’t know what is entailed. After the research team said yes I sent through my CV and INVOLVE’s Public Co-applicant guidance (now updated and migrated to the NIHR Learning for Involvement website).
Diane drafted a work plan for my role as a public co-applicant and I commented on both this and the funding application as a whole. I found commenting on the work plan quite difficult, as it involved me making suggestions dependant on my skills, experience and interests. This is hard when you don’t know the research team or have different motivations for wanting to be involved which the team are unaware of; however, Diane’s amenable and friendly nature made this a lot easier. An example of our comments when working together on the work plan are as follows:
There were three weeks in total, from the time I became involved in the second stage until the final submission – no time at all really! I hadn’t met any of the research team and had a few telephone calls with Diane, but my involvement was mainly all done by email. I therefore felt a bit removed from the rest of the team. Not being involved from the very outset also meant that I had to pick things up and contribute quickly.
The systems and processes of most funders and institutions don’t facilitate effective involvement at the pre-application stage, and if as an experienced lay person I was finding it difficult then it must be even more complex for less experienced people or, for example, those lacking in confidence. If funders and institutions are genuine in wanting meaningful involvement at this stage then resources need to be available to facilitate this. This means providing enough time in the funding process for researchers to work with members of the public to develop an application and providing funding for partnership working at this stage too. These are points raised in a recent NIHR report and improvement plan for patient and public involvement in health and care research. If effectively implemented they could bring about welcome changes and hopefully other funders will follow suit.
Researcher experience- Diane
Since the beginning of my research career, I have been a strong advocate of PPI and the value it can bring in delivering research that is meaningful and relevant to the people it aims to serve. A necessary element in re-balancing power for setting the research agenda, is involving patients and the public as research advisors at the pre-application stage. Prior to this particular project bid, I had worked on a project alongside lay research advisors, but never alongside a public co-applicant. Following the suggestion from Eleni, the project team agreed Eleni should become a co-applicant. I created a draft role description which set out tasks across the project, about two and a half days per week. Here, I learnt the importance of early discussions the hard way, when Eleni pointed out she had other commitments and could spend only one day per week on the project.
Eleni’s contributions as co-applicant were invaluable as they identified issues that the researchers had overlooked and uncovered our hidden assumptions. The process of submitting funding applications can be very time-consuming and, as the deadline draws closer, can get somewhat frantic when co-ordinating material and edits from multiple contributors. Admittedly, it was difficult to strike a balance between keeping Eleni in the loop, and overwhelming her with multiple drafts of the application. Building in processes for feedback was important, so when Eleni gave comments on the draft application, I responded (in tracked changes) to show where her suggestions had been incorporated and giving a rationale where they weren’t.
Despite encouraging feedback from the reviewers the application was not funded. We took the opportunity to discuss the reviewer’s comments and reflect on the experience of working together, to identify what went well and what we could have done better. We agreed that ideally, public co-applicants would be involved from the initial planning stages, so that there is enough time for them to contribute fully and become integrated as a member of the research team. It was great that we had built a mutually respectful relationship which allowed us to openly and honestly share what could be improved upon in future. I learnt a lot about myself, including the impact (both positive and negative) the way I work has on other members of the team.
Public Involvement Manager experience- Lisa
As a Public Involvement Manager, to facilitate co-applicants on research bids, it really helps when involvement is thought about early on (as shown in Eleni and Diane’s comments above), rather than waiting for a more polished draft of an application or a lay summary to be ready, conversations would be better started before this point. Another challenge can be ensuring timely access to funds to pay public co-applicants, as emphasised in SCIE’s recent review of PPI in Social Care research. These important factors can either stymie or facilitate early involvement, leading to a shared vision for the research and co-creation the co-applicants role. Keen to value the contributions of our research advisors at PSSRU I am pleased funding pre-application involvement is a challenge we are overcoming.
The opportunity to be part of a reflective conversation at the end of an application process (as I did with Diane and Eleni) can help to understand what has worked for whom and how. Critical learning from this conversation was about the experience of relationship building, which requires time, openness and the cultivation of trust. It also highlights that an orientation to endings (sadly) may be needed too, if a bid is unsuccessful. Whilst researchers may simply be ‘getting on’ with the next project or bid, conversations at this stage can be important to value the work done together. Consideration to submitting the bid to other funding opportunities, or other involvement opportunities on the horizon are options to consider. An unsuccessful application needn’t be seen as the end of the road!
Looking back and looking forward
All three perspectives demonstrate that PPI is a relational endeavour. For the relationship to be mutually beneficial and rewarding there needs to be ‘conversations that support two-way learning’. Ideally, relationships would be formed early on to enable the members of public and research team to get to know one another and develop a shared vision for the research. Much can be done at this stage to ensure the success of a project should it be funded. For example, ensuring members of the public are part of the team, are clear what their role will be and in what ways they might be involved throughout the project (accepting these may change). This is important for all types of involvement, but especially so where members of the public are a co-applicant. Taking this approach to early involvement can help negate some of the risks of acting in an unethical way. We have summarised some of our recommendations below.
