This article was originally published as part of the "Inspiring Stories" blog on the University of Southampton's Engaged Medicine page.
Liz Allaway is the Communications and Engagement Manager at the Southampton Clinical Trials Unit and previously a Research Engagement Manager at Cancer Research UK. She spoke to the Engageed Medicine blog about how she got into a career in public engagement and why she believes engagement and public involvement with research is so important.
How did you get started with Public Engagement/Patient involvement and what drives you?
I guess you could say I fell into the world of public engagement by accident! I have a science background (with a BSc degree from the University of Southampton from rather a long time ago!), but I changed my career path after university and completed a master’s in journalism before spending 13 years working in radio newsrooms across the south. But science was still always something that interested me. And though I covered everything from politics to sport in the newsroom, it was the science and research stories that always excited me most.
In 2016, I saw a job advertised for a Research Engagement Manager with Cancer Research UK, based within the University’s Cancer Sciences unit. It was a role I hadn’t known existed, but it instantly fascinated me, and I applied. The rest, as they say, is history. After 4 years with CRUK, I began my current role as Communications and Engagement Manager for the Southampton Clinical Trials Unit (SCTU) in December, a brand-new role working to promote the work of the unit and engage the public and patients with the clinical trials we run.
A lot of the engagement I have been part of has been around cancer research, and the real driver for me is speaking to patients and families who have experienced cancer. At Cancer Research UK, the purpose of our engagement activities was to demonstrate where the money they raised for the charity was being spent and how important it was to funding life-saving research. The SCTU where I now work is core-funded by CRUK, as well as running trials with funding from other charities and public bodies. Chatting to patients and families at events and hearing their personal stories is sometimes heart-breaking, often uplifting, and always inspiring. Like so many people, I have personal experience of cancer in my family, as my mum died from the disease in 2015. Understanding more about research has certainly helped me, and I hope the work I do to engage the public has a positive effect on others in a similar situation.
What experience do you have of engagement and outreach activities and their impact?
Engagement can take so many different forms, and that’s why it is so enjoyable. A large part of my previous role with CRUK was running public events. This ranged from organising lab tours for supporters, to large-scale open days with talks from researchers, exhibits and activities. I also helped create activities that explain complex research in a simple and fun way. From “Escape the Lab” - a research themed escape room – to “hook-a-duck clinical trials”, these games engage both adult and younger audiences and are a wonderful starting point for conversations about research. I even worked with immunologist Dr Edd James to create a full-size, retro arcade game called “Killer T Cells”! Seeing someone realise how a treatment they had actually works, or hearing a child tell their parents that they want to be a scientist after taking part in an activity is so rewarding.
Sometimes engagement can also be addressing issues that people find hard to talk about. Balancing the fun side of public engagement with the very real and often heart-breaking experiences of patients and families is extremely important. Equally, we want to be open and honest about things like the use of animals in research and the vital role it plays in the work we do. By engaging with the public about these subjects we make them less taboo, improve people’s understanding, and listen and respond to their concerns. In my experience, even people who come with pre-conceived negative perceptions about certain aspects of research leave these discussions feeling reassured and grateful for having been listened to.
Another important part of engagement is involving the public directly in research. The SCTU already does great work in patient and public involvement (PPI), with a patient representative sitting on each trial management group to ensure the patient voice is heard and make sure trials are designed with not just the research question, but also the trial participants in mind.
Of course, the COVID-19 pandemic has meant that many engagement activities have had to be postponed. While digital forms of engagement can continue, such as using online video meetings for our PPI work and creating more digital activities, I do miss face-to-face engagement, and it’s something I can’t wait to continue in my role with the SCTU in the future.
Why do you think Public Engagement/Patient involvement is important?
Providing the public with simple, understandable and reliable information about research is so important, and something I have done both as a journalist and a communications manager. But engagement is not just about telling people something; it’s a two-way conversation. As researchers and research support teams we can learn so much from speaking to patients, carers, and those with a lived experience of the disease or condition we are looking into. Particularly in the design and running of clinical trials, it is vital that there is a patient voice when we are relying on volunteers to take part in research trials.
With the COVID-19 pandemic, research and clinical trials have suddenly become everyday topics of conversation for people who may not have previously had any interest in them. The ability to be able to engage with the public, making sure the facts are clear and misinformation is dispelled, seems more important than ever.