Working in research is inspiring, challenging, rewarding and life-changing

Debbie Clapham-Riley, is a Governance and Ethics Study Coordinator for the NIHR BioResource, a unique organisation which brings patients and researchers together to speed up clinical trials for common and rare diseases.

You’re a research Governance and Ethics Study Coordinator, what does this mean?

Before any research study can start, it has to be setup, which is where I come in. I have to prepare and review study documentation, submissions to the Research Ethics Committee, open recruitment sites (at hospitals) and ensure contracts and approvals are in place. My role is to ensure our research studies are undertaken in line with statutory and regulatory requirements, adhering to ethical guidelines. I have to resolve issues quickly, answer researcher enquiries promptly and efficiently as to not interrupt the vital work that researchers are carrying out.

A lot of my work is focusing on COVID-19 related research in adults. The studies I am working on are exploring the neurological (brain and central nervous system) and neuropsychiatric (behaviour of the brain) complications after COVID-19. I will soon be looking at making similar studies available for children to take part.

What does a typical day look like?

No two days are the same and that is what I love about the role! I’m always collaborating with colleagues or researchers to figure out a pragmatic approach to a problem or query. We recruit to a lot of different cohorts across the general population in common and rare diseases so no two queries are exactly the same.

One day you could be setting up a new NHS Trust to recruit people to a study, which involves contract negotiation, the next day you could be preparing an amendment for submission to the Ethics committee.

We are required to produce reports to the Ethics committees, this means gathering and analysing data. I also sit on the Data Access Committee, applications for data access have to be considered by the panel and my role is to ensure they sit within our ethical framework.

I recently started line managing in my job, so I’m also learning managerial responsibilities and the ways to be a good line manager for my staff.

Research is an evolving field and a constant learning curve; I learn something new every day. Working at the NIHR BioResource, I consider myself really fortunate to work with a great team of people with great support.

How did you become a Governance and Ethics Study Coordinator?

I worked in administration in the NHS for nearly 20 years, then 8 years ago I started to study law (which I’m currently studying for my Masters). In 2019 I saw an advert for Governance and Ethics coordinator with the NIHR BioResource, it seemed perfect to allow me to combine my NHS experience with my legal studies. I learnt a lot in a short space of time, particularly when the pandemic started and significantly changed the way in which we do things.

In January 2021 I was promoted to one of the Senior Governance and Ethics coordinator roles. I work with a really great team of people and love what I do.

Why did you choose to work in research?

In my Good Clinical Practice (GCP) training, we were told the story of Henrietta Lacks an African-American woman who died in 1951. Her cervical cancer cells were the foundation for the HeLa cell lines research. Unfortunately, she wasn’t aware of the significance of her input into the medical research. I found her story both moving and troublesome, her consent for the procurement and use of her cell lines wasn’t requested. It wasn’t until much later that her family learned the truth and the legacy that she had left behind.

Her story now forms the backbone of informed consent which is vital in medical and healthcare related research. I want to ensure that research participants are empowered to make decisions about their participation in research, have all the necessary details and present the information in an accurate and appropriate manner, and also ensure research outcomes are of the highest standard.

What was it like working in the pandemic in the first few months in an administration role compared to your colleagues in a clinical role?

Like everyone the move to home working was challenging particularly from an Information Governance perspective to ensure we maintained our regulatory compliance.

The COVID-19 Research cohort in the NIHR BioResource was set up in response to the pandemic, our focus changed quite rapidly to facilitate this emerging area of research. I was compiling the documentation required to facilitate recruitment, getting approvals, taking on feedback from our collaborators and recruiters, making changes in response to this feedback to try and make it as seamless as possible for the teams on the ground. Collaboration is an extremely important aspect of my role and during that time we extensively talked with our partners, principal investigators (PIs), research teams to best use the opportunity that was presented to us.

Both centrally and at sites all around the country, we had to swiftly set up processes and standard operating procedures (SOPs) to ensure activity and samples adhered with Human Tissue Act (HTA) compliance, collaborating with local HTA Designated Individuals and R&Ds. This was a learning curve for us due to the change in our processes therefore we had to learn swiftly what was required and implement it. 

Setup for recruitment had to be done speedy but efficiently and we also had to think carefully about infection control for volunteers and staff when it came to participant facing documentation and making sure everyone was safe.

Although we are not front-line staff, by helping to facilitate good quality research, it does makes me feel like we are playing our part in some way.

There are so many roles working in research, explain why yours is important?

I fully believe participants need to be empowered with the correct information to make an informed decision, free of any persuasion or undue influence. Any consent form, participant information leaflet, participant facing document has to be either devised by or reviewed by the Governance and Ethics team. It is imperative that our volunteers trust us to do what we say we are doing. Without our volunteers we couldn’t do what we do.

Have you ever experienced any challenges in your career, what were they and how did you overcome them?

On a personal level, confidence has been a massive challenge to overcome. For years I thought I had reached as far as I could go, it was a massive step to take myself out of my comfort zone and push myself to try for something different and challenging.

Then came the imposter syndrome, but when I look back at everything I have accomplished with my studies, whilst working, raising a family, then being given the opportunity with the NIHR BioResource and everything I have achieved in the past two years, including promotion and being a part of COVID-19 research, I can see that that initial push outside of my comfort zone has really paid off.  The constructive feedback and strong mentors that I work with have allowed me to change my thinking and to believe in myself.

What do you think are the misconceptions about working in science/ research and how do you overcome this?

I think traditionally it has been seen as a male orientated area, however, from my own experience I can say women are starting to make up a proportion of people in science and research. I also feel that women still believe that having, a family for example, can be a barrier to achieving a career particularly in science and research. If the pandemic has taught us anything, it is that we can still deliver consistency high quality work and bring up a family. Having a supportive employer that recognises talent is also important.

What advice would you give to someone who wanted to pursue a career in science/ research area?

Do it! It’s inspiring challenging, rewarding and life-changing. You work with amazing, talented people and you’ll make a valuable contribution to research. That contribution, however small, can make a big difference to someone. You can find incredible mentors in science and research that can help you.

If you could go back in time, what advice would you give yourself when you were starting your career?

Have confidence, you can do it, you can make a difference. You will surprise yourself with the strength you have when you need it the most.