During May, we are posting a series of blogs about patient and public involvement as part of the NIHR’s Be Part of Research campaign to mark this year’s International Clinical Trials Day.
On Monday, we wrote about our Research Advisory Group and the work we have been doing to increase the diversity of its membership. Today, we introduce some of the members. In the second of two blog pieces today, please meet Rashmi, Tony, Sweta and Graham.
Why did you join the RAG?
Rashmi: I have been looking after my elderly mother who is suffering from long-term multiple illnesses. These caring responsibilities have helped me to better appreciate key physical and psychological wellbeing challenges which patients and their loved-ones face every day, and crucially how with a little support their health and emotional wellbeing needs could be significantly improved. I am from a Black, Asian and minority ethnic (BAME) background and I am an ex-Chair of a large multi-cultural Association in Lambeth which has membership of diverse BAME communities, many of whom are experiencing and living with significant health and social care deprivation. I hope to be able to support the RAG with some of the practical challenges BAME communities are experiencing in the community, including health and social care inequalities and discrimination.
Tony: I believe very strongly in the benefits of medical research, and, as an outpatient for the last 10 years, and a patient assessor of the care environment, I have seen for myself that research active hospitals like Guy’s and St Thomas’ present so many more treatment options for patients. As a member of the RAG I hope to be better placed to advise researchers about how best to involve patients and the public in research and to increase their understanding of the strong relationship between research and improved quality of healthcare.
Sweta: I wanted to learn about how research translates to real world patients and how underrepresented groups are recruited/involved.
Having recently had a prolonged episode of care as an outpatient at Guy’s and St Thomas’, I wanted to give back in some small way.
Graham: I joined RAG after the invitation came up via my local surgery Patient Participation Group, of which I’m a member. I wanted to keep up my links with the NHS (I worked for the NHS for 16 years before I retired), and hoped in this way to make a small contribution to the support of the health service.
What has your experience of the RAG been?
Rashmi: In just two months, I have managed to learn about a very wide range of activities the RAG is involved in and oversight of its work at the BRC and at Guy’s and St Thomas’- from early-stage development of health care systems and tools to implementations of medical trials and treatment procedures. Listening to clinicians and health care professionals at the RAG has been very informative and given panel members the opportunity to better understand the challenges the BRC is trying to resolve. And it has given us the opportunity to share with healthcare professionals key difficulties and experiences patients and communities are facing on a daily basis.
Tony: I have really appreciated the way that BRC staff have brought RAG members up-to-speed about the impressive scope of research work being done at Guy’s and St Thomas’ and partner institutions, and how this is being used in day-to-day treatment. I am really looking forward to working with researchers in particular areas, such as precision medicine, which will revolutionise treatment for conditions like cancer.
Sweta: It’s all been very interesting.
Graham: My RAG experience has been positive: interesting, well-run meetings that give us insight into the research infrastructure within the NHS.
What do you enjoy about being part of the RAG?
Rashmi: It has been useful to hear the views of other panel members and I would encourage wider engagement and active participation with wider communities so that the value of both BRC and RAG can be truly realised.
Tony: I enjoy the interaction with other team members from such a diversity of backgrounds, and the stimulation of working with the multidisciplinary team of scientists and clinical staff at the cutting edge of research. As my background is in school teaching, I find it really exciting to have been given this opportunity to make a contribution to such important work in a very different field, where I am learning so much about designing studies and trials.
Sweta: Learning about how things work in clinical research and how patients are involved in research. Real world examples and stories are really interesting to hear about.
Graham: RAG members and staff are friendly and supportive. The activity I’ve enjoyed most has been being a member of a panel for a mock interview for a researcher who was applying for a research grant. I felt I was able to bring her a useful and relevant patient/user perspective that would not otherwise have been there.
What would you say to other thinking of joining the RAG/getting involved in research?
Rashmi: I believe every one of us have skills and experience which can (and should) be used to successfully achieve effective community health and social care improvements. I encourage everyone to get involved at any level suitable to their ability. It is equally important for all professionals to recognise, respect and appreciate members of the public for their contributions and time. If this is done with equal respect by both sides, then involvement and active participation will easily be achieved.
Tony: We can all see what medical research has done for humanity during the pandemic, so there has never been a better time to get involved in research. Participating in trials is a very positive experience and can lead to a clearer understanding of the patient’s individual treatment journey while enhancing their knowledge of their own condition.
Sweta: Do it. It’s valuable for you and your community.
Graham: Go for it! You’ll learn new and interesting stuff, meet nice people and may even have some influence on the way NHS research money is spent.