‘Inspiring Stories’ with Catherine Pointer
Research Fellow Cancer Sciences
c.a.pointer@soton.ac.uk
This is part of the Engaged Medicine ‘Inspiring Stories’ blog series. The blogs explore the stories behind outreach and patient-public engagement activities of staff and students from the University of Southamptonās Faculty of Medicine.
What motivated me to get started with Public Engagement/Patient involvement
I first started getting involved in public engagement in 2018 after I started struggling mentally with my own illness. I had had leukaemia twice and a bone marrow transplant as a teenager and went straight from that back into intense education to catch up. In my mind I was dealing with my cancer by becoming a cancer scientist, rather than talking about all the emotional toll cancer takes on a person. But in the final months of my PhD, I was diagnosed with several basal cell carcinomas which had been caused by the pre-treatment for my transplant. Even though BCCās are at the very periphery of cancer and non-life threatening, I was absolutely shaken and mentally fell apart. I took a 6-week break from my PhD and realised I had a lot of feelings I needed to start talking about. When an email was sent around asking for a volunteer to talk about cancer at a fundraising event, I viewed it as a way to voice my experience and reach out to a group of people who might understand how I was feeling.
For me, public engagement started off as therapy to reach out to other patients, come to terms with my own illness and show people what scientists really do. Then as I gained more positive feedback and my confidence grew itās become more about reaching out to those who are struggling for any reason and letting them know that the very thing thatās derailed you might just become the thing that makes you successful. Itās also still very important to me to show the public the real, honest science and dispel any myths or concerns they have.
The Engagement/Outreach activities I have done and my experiences
I have done a big range of different kinds of public engagement. I started off just doing science talks at CRUK fundraising events and as my confidence grew I did a few newspaper articles with CRUK. I then branched into doing science career talks for teenagers in Southamptonās LifeLab and have been approached to be in newsletters within and outside of the university. Iāve done āthank youā videos to fundraisers and when Covid-19 happened I started doing all my usual talks virtually. Last summer I was interviewed for a podcast and was interviewed live on Sky News. Itās been a combination of volunteering for opportunities and then subsequently being approached/recommended to take part in further events.
My first ever talk was terrifying. I had a morbid fear of public speaking and I was talking to a room of strangers about something I hadnāt spoken about for 10 years. I was deliberately doing something I wasnāt comfortable with in the hope there would be a positive outcome. When I was introduced and the room was told I was going to talk about cancer research and science, I could see people groan and carry on with their lunches. Then the moment I started talking about my experiences as a patient you could hear a pin drop. After talking about what happened to me, I spoke about the science and people kept listening. I was shaking like a leaf at the start but at the end I got a standing ovation and it was very emotional. That day had a profound effect on me and everything Iāve done since has been a real snowball of positivity.
The importance and impact of Public Engagement/Patient involvement
I think public and patient engagement is important because there can often be a big divide between scientists and the public. Scientists can often be portrayed negatively in the media and in films/TV as mad people trying to play god or profiteer off disease. When I stand up and say I am a scientist and I am a patient it really catches people off guard, and they realise there really is no ulterior motive other than wanting to improve medicine and peopleās lives. I donāt want people to have the same damaging treatments I had, and Iām aware I could get cancer again, so I want medicine to be much improved by the time that happens.
I think a lot of people initially donāt want to hear about science because they had bad experiences with it at school and immediately think āI donāt understand science, it makes me feel stupidā. Itās very easy to forget that when you work in science. For me, thereās nothing better than that lightbulb moment in peopleās eyes when youāve explained something in a way that the public audience 100% understands. You can see them become excited about it and go from being sceptical to fully backing you and your work. That pays dividends for us as scientists because so many of us rely on public support and fundraising to do our work. The best thing about public engagement is it doesnāt just help the public understand and support us, it also can have a huge impact on you as a person and a researcher and can help your confidence grow. It can also open new opportunities for you both professionally and personally.
Stay Connected! To find out more about the ‘Inspiring Stories’ series, Faculty of Medicine educational programmes and research, or to get involved use the links below or contact Dr Lucy Green.
University staff or students click here for the Engaged Medicine SharePoint