I’m a lay member of the Norfolk & Suffolk Patient & Public Involvement in Research Panel (the Panel) and I’ve been involved with health research for well over ten years. The Panel was set up to facilitate and coordinate the involvement of lay members in research. In this blog I talk about the Panel and the benefits I’ve gained from my experience of being involved in research.
The Panel acts as key bridge between academic organisations and lay members. For example, through its partnership with universities the Panel helps to settle important practical and support issues such as office space, finances, setting up meetings, writing bids and training and support for lay members. It’s important for all patient and public involvement panels to be empathetic and non-judgemental towards the needs and issues that the lay member may have on any aspect of doing research. In my experience, national initiatives have not always been as supportive and so the need for a local approach to dealing with the needs of individual lay members is critical. As well as providing the day-to-day support on expenses and meetings, panels need also to provide emotional support. The Panel is respectful and responsive to the needs of its lay members and this has led to mutual respect. Such support is not always as forthcoming in other research communities.
From the beginning I was involved as a co-applicant to an NIHR Research for Patient Benefit funded project, to help develop PRe-operative Education for PAtients and their Relatives (PREPARE). Being a co-applicant was a new experience and being involved from the beginning helped me to build my understanding of the whole research process. The PREPARE study, carried out in East Anglia, was an action research study aimed at identifying ways of improving patient education for patients undergoing surgery for colorectal cancer. My role, assisted by the Panel, evolved over time and developed without unnecessary restrictions. For example, I completed some of the data analysis with support from the research team. Having had the experience of being involved in the whole research cycle, if I were to be a co-applicant again, I could more easily define and structure my own role. As an individual with a condition relevant to the one being investigated in the PREPARE study, I learned the value of not looking at the issues from an individual standpoint. I came to understand that I was representing not a personal agenda, but a group one. The learning gained was being shaped by an academic model, not an emotional one. With the support of the Panel and the research team in underpinning my learning journey, I gained the confidence to know that I was on the right track. This meant I could add value to information gaps and help to make my contribution more timely and relevant. As well as being involved from the beginning as a co-applicant, I was pleased to be involved in the dissemination of the research findings. Lay members are sometimes involved in the middle of the research process, and then are not used or even cited as part of the research outcomes and dissemination. In my view, if I can’t show that my involvement has made a difference to the project, then the funders won’t fund us again. The involvement needs to be recorded and demonstrated. It’s vital that people are not excluded from the process of dissemination. In fact, my involvement in the whole PREPARE research cycle, facilitated in this way enabled me to contribute meaningfully to the project and to feel confident that the research was being applied to the health care of patients.
There are a lot of volunteer initiatives in health research although the activity can be unevenly spread and not well publicised in terms of highlighting the benefits that volunteers can bring to the research process. What we need is a ‘volunteers’ hub’ which could fulfil several functions – a one-stop shop for potential volunteers, providing training and support, office facilities, information, assistance with travel and finances, advice, mentoring and guidance. I don’t mean a virtual hub but a physical space where vital face-to-face contact can take place. Not everything is digital. Another key role of such a hub would be to celebrate the public’s valuable contribution to research, which doesn’t get highlighted enough! The hub could also play a valuable role in assisting researchers as well. Often they don’t understand the costings involved in including lay members in research grants, or how to embed their involvement fully into the research cycle. Researchers also need help in understanding the time, travel, commitment and intellectual property issues pertaining to volunteers. Volunteers may be paid for their time and expenses but intellectual property is given for free!
But it’s not always about money. It’s also about treating volunteers as bona fide members of the research community. Often, they fall through the slats, being neither staff nor students they don’t have access to the many facilities that research organisations can offer. Visiting Researcher status, for example, can give volunteers legitimate access to and benefits of the wider research community.
To sum up, as a member of the Panel involved in the PREPARE Study, I was uplifted by the openness and willingness to explore my role in the research process. The Study respectfully handled the experiential knowledge that I could offer and my relative lack of academic knowledge. I was particularly pleased with the way in which I was put on an equal footing with the researchers and included as a part of the team. This is in contrast to my previous experience of being on the periphery with my ideas being taken off me. Being a member of the Panel gives me the feeling that I no longer have to fight for my inclusion. I feel empowered to be fully and legitimately involved in research. It gives me validation.
This blog refers to independent research commissioned by the National Institute for Health Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-1207-13321). The views expressed are those of the author and not necessarily those of the NHS, the NIHR or the Department of Health.