My route into research ethics began in 2007 after my husband became ill with malignant melanoma.
Back then, melanoma was difficult to treat, and he was desperate to get on to a clinical trial. He joined a trial at the Royal Marsden NHS Foundation Trust, where he was treated but he died in 2010 before the study finished.
After he passed away, I asked his medical team at the Royal Marsden for advice on what I could do to give back. I was working as the head of a trade association, so I had an interesting set of skills that I thought might be helpful and I was keen to make use of them in some way.
I was told that I should get involved in research ethics. My first response was what is research ethics. This was way before the Health Research Authority (HRA) was established, and I had no idea what research ethics was or involved.
I was informed that research on humans must go through an ethics committee before it is approved, and that there is European and British legislation in place to safeguard people who take part in research.
After finding out more, I decided to become a Research Ethics Committee (REC) member. Following an interview, I became a lay member of a Research Ethics Committee in 2011.
Being a member is a big commitment. We read lots of documents and hold a meeting every month, where we review research applications, and they last around half a day.
We appoint a lead reviewer and a second reviewer to each study; they present it to the rest of the committee at the meeting, and we discuss any ethical issues we believe might arise.
Then we speak to the researchers about it and ask them for clarification then decide our opinion and that goes through to the HRA which issues approval.
I became Chair of the Berkshire B committee in 2021. I’m retired now but being a chair is almost like having a full-time job again and I thought very carefully before I took on the role, but it has been immensely rewarding.
The Covid-19 pandemic made an enormous difference to the way we work, and we were able to turn things around very quickly.
Right at the start, our committee began reviewing the React study, which was the most accurate assessment of the level of covid infection in the country and was quoted in all the TV bulletins.
We had to turn around our review in hours instead of days and we have learnt such a lot from that. Nothing got left out in terms of the thoroughness. It was quite exhilarating because you really felt that you were doing something useful.
Since becoming Chair, I have really streamlined the way we work. The lead reviewer and REC members upload their comments or concerns before the review meeting so that we have already focussed the discussion which helps plan our questions for the researchers.
I won’t let us get bogged down by trivial details and we stick to the key ethical issues. This has really shortened the time our review meetings take; we don’t keep busy clinicians waiting and it has become a much more enjoyable process.
I also really encourage the group to meet socially, and we held a summer party last year where partners were invited and have just met up for a post-Christmas meal together.
As our meetings are held remotely, these social gatherings are important in helping to foster good team relations.
Every member of a REC is a volunteer, and they all do a fantastic job. We all take it very seriously – expert or lay, everyone has a real contribution to make and puts in the work.
We are a key part of the research community and play a crucial role protecting participants and helping to ensure the medicines and treatments are safe and effective.
But there is still plenty to do to make the research ethics process better.
We need to make it faster and simpler and make it easier for people participating in research to understand what it is they have been asked to do.
I am working with the Health Research Authority on their Think Ethics programme to help get this right and I am looking forwarding to seeing their recommendations.
Sue Harrison, Chair of Berkshire B Research Ethics Committee