The Simple Act of Listening
#CelebratingEngagement
with Kelly Gleason
Kelly Gleason is the Cancer Research UK (CRUK) Senior Research Nurse at Imperial. She received a President's Award for going above and beyond in her work to involve patients in cancer research. From running science cafes to training researchers; organising laboratory tours, to helping dancers create an original piece representing myeloma and immunotherapy - over videocall, we discussed her passion for involving patients in research.
To start, I was keen to ask Kelly: what does societal engagement mean to her?
“Well, because I work in cancer research, it means making sure patients are at the centre of research, no matter how far we are from the bedside”.
“I think this is essential – [research] has to be something that patients think is important, and we have to develop research that patients will want to take part in”, she explains. “We could design the most extraordinary studies, but if patients don’t want to take part – well, they’re the most important part of this, so I think it’s important to engage them.”
I’ve read a little about Kelly’s work, so I also want to know more about the Science Cafés she has set up at. What inspired them?
“I had been to a conference in the US, and the keynote speaker was a gentleman who lost his father to Huntingdon’s Disease; and his brother was in the advanced stages of Huntingdon’s. He was a war reporter, and but he gave that up to travel the world to raise awareness around Huntingdon’s Disease, and the importance of research, because there’s so little known about it.
He said, which really hit me, that we will never deliver excellence in research, until we get patients and researchers together in the same room.”
“And in my job, with CRUK, a fundraising organisation, I go out into the community to talk, and get involved in fundraising. I work with scientists, and I work with the clinicians, and I work with patients and the public, and I thought, how can I start to create spaces, to bring these groups of individuals together. So on my way back, after that conference, I thought of starting the science cafes at our local Maggie’s [Centre, which offer support to cancer patients]; just a space where our researchers could share their research with a lay audience, in a really kind of relaxed, safe environment where we could have a discussion.”
Kelly explains that many of the patients attending sessions at the café are better able to process and understand their diagnosis and treatment after taking part. “They get to ask questions, and to learn a little bit about the science… often, you get a cancer diagnosis, but it’s complicated – It sometimes takes time to more fully understand your cancer and the treatments you received.”
But the researchers also get a lot out of the experience too. I ask Kelly what advice she would have for researchers considering patient-facing engagement, and she advocated passionately for the simple act of listening.
“You really have to listen to patients. Sometimes they’ll talk more broadly about their experiences – some of it relevant to your research, some of it not - but listen to it all because it will influence you as a researcher.
And if it’s not influencing what you’re doing today, it may influence what you’re doing down the line. And it may spark new ideas, because you hadn’t considered that you’re maybe not as familiar with what a patient goes through in cancer treatment, and how they feel about it and how it impacts them. So it doesn’t have to be complicated, just be brave and vulnerable enough to converse with patients, and really listen to them, and it will make you a better researcher.”
In contrast, I want to know about Kelly’s flashmob dance project, a really novel approach to public engagement. I ask Kelly to tell me more.
[Some} choreographers and dancers came in for a laboratory tour and then choreographed a dance, partly around the science, and partly around the patient experience.
[The tour gave the dancers a chance to] understand what myeloma is; what immunotherapy is, how it works and how the scientists work with patients in this whole arc of delivering research; and they were so excited to put on lab coats and go into the labs. They interpreted it and choreographed this beautiful dance that was truly moving and emotional.
We speak about Kelly’s incredible experience in this area and her advice to researchers looking to share their work with the wider world. She talks about the importance of demonstrating valid and authentic engagement in funding applications. But, on a more personal level, she reflects on how she’s incorporated patient involvement across all of her work.
“I never set out with a big plan – it’s been very organic but I knew it was important. I knew it was really important that patients and researchers work together.
When I look back I think that I knew that had to be at the core of all we did. I used opportunities that presented themselves to make that happen, to help us deliver excellence in research, to raise awareness of the importance of cancer and the need for more research in this field. If you believe and value the necessity of having patients at the centre of research, you will find ways to do it and not to worry about that. Something will come up. If you’re already on board with it, it will happen – so just know that it matters.”
Kelly was photographed at Maggie's Centre, Charing Cross Hospital, West London
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