There are more than 800 Research Ethics Committee (REC) members at the Health Research Authority (HRA) who volunteer their time to provide our Research Ethics Service.
They play a crucial role in upholding the dignity and safety of research participants in the UK, and review all applications for health research before it can be approved to go ahead. In 2024, REC members volunteered 75,000 hours of their time and reviewed almost 4,000 applications for health research.
But what’s it like to be part of a committee and have a say in whether research receives ethical approval?
We met Cornwall and Plymouth REC member, Yinka Cole, to hear her reflections on her first year in the Research Ethics Service.
Yinka is an Associate Director of Clinical Data and Site Management. She worked as a postdoctoral scientist at St Thomas’ Hospital in London before transitioning into various clinical trials roles. She has a BSc in Biochemistry from the University of Greenwich and a PhD in Surgical Research from University College London.
What inspired you to join our Research Ethics Service, Yinka?
My journey into the Research Ethics Service was inspired after attending a conference in London in September 2023. There was a presentation by Dr Suki Balendra, Director of Strategic Partnerships at Paddington Life Sciences, and Neelam Patel, Non-Executive Director at the HRA, about the lack of diversity in clinical trials, despite the capital, London, being the most diverse city in Europe!
I have often experienced the disconnect between my career as a clinical research professional and my background as a member of an ethnic minority group, so this presentation was music to my ears.
The history of research, particularly concerning people of ethnic minorities, is complex to say the least. From the American Tuskegee study, which resulted in the tragic death of over 100 Black African American men, to the case of Henrietta Lacks, a Black African American woman whose cancer cells were taken without consent, there are deep-seated wounds and mistrust.
For instance, in my family, at least four out of my six siblings said they wouldn't participate in clinical research or trials. I understand the hesitancy from people of ethnic minority ethnic backgrounds. However, I also believe we can’t let past harm prevent us from accessing potentially life-saving treatments, now or in the future. I joined the Research Ethics Service because I believe bridging this gap is essential.
What were your first impressions of your Research Ethics Committee?
My first meeting was daunting but a wonderful experience. Everyone was friendly and I was told there was nothing like a stupid or silly question. Each meeting has a lead reviewer for each study, who briefly explains the study and provides a summary of their findings or any concerns. Other members also comment on any findings from their own review.
I couldn’t help but notice the effort and passion shown by members of the committee, and the way each study is thoroughly reviewed, pulled apart and questioned, leading to clarifications from the applicant on their intent for the research.
Given the experience I have working in research, it’s been brilliant to see how things work on the other side (i.e. as REC member).
I also immediately noticed how much patient safety was at the heart of each REC member and how a lot of the questions that they ask go beyond the medical considerations of the study. Members not only prioritise safety, they take a holistic view considering the patient’s overall well-being and dignity.
It’s also been inspiring to witness the passion and dedication of researchers submitting their trials or studies. They clearly demonstrate a strong commitment to upholding the health and rights of participants.
What’s surprised you the most about being a REC member?
The vast therapeutic treatment areas covered by the studies we review. For example, it has been nice to see more studies than I expected relating to mental health.
I initially wondered if you need to be an expert in a particular field and have some specific technical or scientific background to be a REC member, given the wide range of studies that are discussed.
However, the committee that I am part of has people from various backgrounds and professions. There are some people with that specialist, medical background, but that is not the case for everyone.
There is a great value in bringing a group of people together with their different experiences and viewpoints.
What have you learnt from your experiences in REC meetings so far?
My time in REC meetings has demonstrated the rigorous review process for all research, particularly the emphasis on ethical standards and participant well-being. This has strengthened my ability to communicate effectively with diverse communities, especially members of ethnic minority groups, about my experience. I aim to increase understanding and trust in research, which hopefully, will ultimately lead to greater participation from diverse groups.
When I became a REC member, my family and friends didn't really understand what it meant or how it connected to clinical trials or research participation, especially within the NHS. And as I mentioned, I know most of my siblings are wary of participating in studies. But I've been able to show them and others just how much careful review goes into research and clinical trials before they're approved.
What's been your most memorable REC meeting?
The REC training day last October in Reading. It was my first time meeting my REC members in person, as we usually connect via Zoom. The large hall was filled with over 100 people chatting at tables, and I didn't recognise anyone. Feeling a bit alone, I randomly chose a table and sat next to a gentleman who promptly introduced himself as David Carpenter. I soon discovered that David was actually one of the presenters for the day! In less than five minutes, David was sharing his experiences as REC chair and his 24 years as a member. It's very sad that he's no longer with us.
We had a wonderful time discussing science, research, and work. He was genuinely interested in my experience as a REC member. By the time we finished chatting, my actual REC members had arrived and were seated at a different table. They invited me to join them, but I was enjoying my conversation with David so much, that I decided to stay where I was!
What would you say to someone thinking about joining the Research Ethics Service?
Don’t think too much, just join! Allow around 3-6 months to get used to the meetings- it can be a bit overwhelming to start with due to the terminology used and the wide range of studies considered. I'd say don’t get stuck with reading all the documentation when you start out, just sit in the meetings, listen and learn. I found this very helpful!
Also, don’t be afraid to ask questions. My REC were very welcoming and are still very helpful with any questions. They almost feel like a family- this may be because some of them have been having these meetings together for years!
As a REC member you gain such a unique insight into the world of research, clinical trials and approvals in the UK.