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 want to introduce some of the members. In the first of two blog pieces today, please meet Chantal, Clive and Fola.
Why did you join the RAG?
Chantal: I was a patient member with the ICU STEPS, which is a support group for patients that have been in intensive care. I went along to a conference about intensive care in 2014 with 200 medical professionals and I was the only patient representative. It was there that I met Prof. Nicholas Hart, Director of the Lane Fox Respiratory Service at Guy’s and St Thomas’ NHS Foundation Trust and Dr. Bronwen Connolly, Critical Care Physiotherapist and Senior Lecturer in Critical Care. They invited me to become a member of the Respiratory PPI Group. I met Jacintha at my second meeting and she invited me to apply to join the RAG.
The NHS helped me get my life back. By contributing my time I am gaining such insight into the research process and also the researchers gain insight from my experience as a patient.
Clive: In 2016 I had prostate cancer and as a way of saying thank you for the treatment and support I received, I started to get involved with Macmillan and their prehabilitation project. From that, I got a lot out of insights into the processes of cancer research and it sparked an interest in medical research in general. I decided to take part in a voluntary medical trial for high blood pressure at St Thomas’ Hospital. Whilst there I picked up a leaflet to join the NIHR Research Action Group and became a member. I now sit on 10 different PPI committees across a broad spectrum, complete countless surveys and check the content is in plain English for research organisations.
Fola: Firstly, the RAG involves working with researchers who study various topics. It seemed like a good opportunity to learn more about research and improve my health literacy. Secondly, I wanted to advise researchers on how best to engage and involve patients and members of the public (particularly those from underrepresented backgrounds) in research. It was a great opportunity to work with individuals from different backgrounds! The RAG provides an opportunity to work with patients, carers, members of the local community and researchers; it was a great chance to connect with others and learn from their lived experiences.
What has your experience of the RAG been?
Chantal: I love it. I enjoy learning about what goes on in the background. It began with my interest in my own health and I have since met people with other conditions. I find it fascinating to hear their experiences and learn what is being done in the world of research to provide better patient care. I’ve been involved in three clinical trials as a participant as a result of my membership, have contributed to numerous studies as a patient advisor and sat on steering groups for clinical trials. I am always very keen to volunteer when asked to give back to the NHS and see research progress.
Clive: It’s been a very positive one that has changed a lot of my previous misconceptions. By meeting and hearing people from diverse backgrounds you really start to see things from a different point of view.
Fola: I have enjoyed the RAG induction sessions, as it has given me a chance to learn more about health research and connect with the current members of the RAG. I am looking forward to the next few months, because there will be scope to get involved in activities to determine the research priorities for the BRC. I am certain this work will be impactful, and I am looking forward to maximising the research benefits for patients.
What do you enjoy about being part of the RAG?
Chantal: I’m fascinated to learn about how research is developing. It’s been especially interesting to hear about how far we have come this year during the pandemic. I enjoy each and every presentation and some really resonate with me. I was recently invited to join the BRC Executive Board which was a completely new learning experience. I never tire of learning and appreciate all the opportunities that I have been offered as a member.
Clive: I have yet to attend a meeting that I have not enjoyed and learnt something new from. Most meetings are now online but I personally can’t wait to have the face to face meetings back where you can interact and really feel people’s emotions when expressing their views and opinions.
Fola: I enjoy the supportive culture of the meetings! Despite all the sessions being remote, it has been good to learn more about other members of the RAG. I love the fact that members are from different backgrounds and can bring their unique perspectives to the meetings.
What would you say to other thinking of joining the RAG?
Chantal: You will enjoy it, I do!
Clive: We all have an opinion but it can only be heard if we stand up and voice it. If you want to be a part of research and add your own life experience to make things better for all then this is your opportunity.
Fola: Get involved! The thought of getting involved in research can seem daunting at first because you might not know what to expect. However, in my experience, I have found that there is a lot of support and encouragement for those who want to get involved in research, irrespective of their background. My advice is, take the leap and get involved because it can be fun, impactful and a great opportunity to meet lots of inspiring people from all walks of life.