On the 24th of September, World Cancer Research Day, we launched Engage – a new collaboration with Solving Kids’ Cancer UK that hopes to make it easier for researchers and professionals to get advice and feedback from families who have lived through childhood cancer.
There are lots of different terms used for people with lived experience who get involved in research, service design and policy: advocates, parent advisors, and patient and public involvement representatives, to name a few. There are also many different ways people can make a real difference, whether helping researchers understand the potential real-life impact of their work, reviewing information for families, or helping charities fund the research projects that matter most to those with lived experience.
I spoke to Vicky Inglis from Solving Kids' Cancer UK just days before the platform went live to find out why she's so excited about Engage and the difference it could make. Here's what she had to say.
Vicky Inglis, Head of Family Support Services at Solving Kids' Cancer UK
Could you tell me about what you do at Solving Kids’ Cancer UK?
I'm Head of Family Support Services. There is a small team of us with lived experience – we are parents who have lived through seeing our child diagnosed with neuroblastoma. Our mission is to ensure every family that needs support, knows where to go. They might need signposting or maybe don't understand some of the jargon that is being shared with them. Every single diagnosis is different, and every family has different needs before and after treatment - that's something that we take really seriously.
The Family Support Services team at Solving Kids' Cancer UK
Do families and survivors often ask about getting involved with research?
Just like every family needs different support, they can feel very differently about getting involved. If you're a bereaved family, sometimes that desire to be involved can be really, really strong, or it can feel too raw and too difficult.
However, what we do find is that there is a core group of parents that are really engaged as parent advocates. It’s a relatively small pool who are really keen to get involved in different elements of research, whether that's looking at patient information leaflets or attending meetings to be a parent voice. The problem is that these same advocates get asked again and again.
I do think there are more parents out there that want to get involved but just don't know how.
So, what is Engage, and how could it help?
Engage is an online platform that we hope will bring people with lived experience together and enable them to get involved. It’s a collaboration between CCLG and Solving Kids’ Cancer UK, which we have designed to really tackle the gap I mentioned in the advocacy space. Engage also offers a much wider network, as it welcomes patients, siblings and grandparents as well as parents – it’s a safe space for anyone with lived experience who wants to help. We want people to recognise that their experiences are valuable and can make a real difference.
We hope that it might make sharing experiences easier, and make it more visible, so that more people get involved. There will be a whole range of opportunities available for anybody that wants to start their advocacy journey. It's really flexible, so people can be involved in as little or as much as they like.
Vicky at a Solving Kids' Cancer UK event.
Why is it important that this is a collaboration?
Charities really need to be able to do things collaboratively rather than in silos – we all have limited resources but a shared mission. Before Engage, charities would all have had different people wanting to be involved in things. That's great, but that's all been done separately. In the children and young people’s cancer landscape, more can be achieved by pooling resources and expertise rather than all duplicating the same work. So, to be able collaborate on the Engage platform is brilliant.
How will Engage support better research?
I think the beauty of Engage is that it's a two-way thing. Not only is it going to be giving that real meaning and purpose to each person with lived experience, it's also really valued by the research and professional community.
If there's a researcher that needs a sibling that has gone through this journey, for example, they might not know where to find someone like that. We can share their request on Engage and facilitate that introduction. It will all be done very carefully, because we want to maintain Engage as a safe space for people with lived experience. There will be a code of conduct for everyone, wellbeing support, and training modules.
Why is training and wellbeing support so important?
We're really helping to train the advocates of the future, so we should be thinking about what the future looks like. It's not just about the here and now. We want to help advocates know what to expect and reassure them that their lived experience is helping in the best way possible. Equally, it gives researchers the confidence that the people that they need to help their research are being looked after.
What impact do you hope Engage will have?
I think it is going to be amazing. I can't wait to talk about it with our community and help people on their advocacy journey. I think that's really special.
Lived experience isn’t tokenistic. There's a real need for those stories to be shared and a real difference that can be made. I think Engage provides the infrastructure to support this community so that they can safely and confidently know that their voices are being heard.
Ellie Ellicott is CCLG’s Research Communication Executive.
She is using her lifelong fascination with science to share the world of childhood cancer research with CCLG’s fantastic supporters. You can find Ellie on X: @EllieW_CCLG
