Embedding patient advocacy within a discovery science initiative

The voice, experience and insight of people affected by cancer is central to the work of Cancer Grand Challenges. We want to ensure that the research conducted by our funded teams translates into tangible impact for people affected by cancer across the globe. 

Cancer Grand Challenges is a discovery science initiative, and patient and public involvement and engagement (PPIE) within this space is often less commonplace than in the clinical research setting. 

But we’re pushing to do things differently. 

Helping us to carve out the path for how we embed patient advocacy within the initiative is the Cancer Grand Challenges Advocacy Panel. From helping to shape the challenges to working closely with funded teams, the Advocacy Panel, chaired by Margaret Grayson MBE, is instrumental in helping us to achieve our mission.

Each member of the Advocacy Panel has their own unique skills, networks and experiences with cancer, but what unites them all is the belief that research will make a difference for people affected by cancer and a passion to ensure that the voices of those affected are heard.

Central to the panel’s aims is to ensure that the funded teams are conducting their research involving people affected by cancer in a meaningful way.

“My keen interest was in making sure the patient voice came through in the applications and the patient voice was taken into account when making the decision about which teams or challenges to fund,”

Jim Elliott, former panel member  who was involved in patient advocacy work with Cancer Research UK before joining the panel in 2015.

The panel has an important part to play at each step of the Cancer Grand Challenges funding cycle, including being part of the global conversation that generates the ideas for each new round of challenges; reviewing and providing feedback on the advocacy components of applications from global teams that have applied to take on the challenges; and working with the funded research teams and the patient advocates within those teams.

Jeremy Dearling is a former member of the panel who became involved in PPIE in 2012 after picking up a leaflet in a hospital waiting room whilst his wife was undergoing cancer treatment. 

“I think it's important that the panel holds the science and the teams to account, so that they don't lose sight that beyond the Petri dish, beyond the computer modelling there is a very sick person living with or dying from cancer,” he says. 

“I hear from researchers, academics and clinicians alike that they do value being reminded that what they're doing is ultimately important to patients.”

Cancer Grand Challenges builds on the success of the Cancer Research UK Grand Challenge, established in 2015, and since its inception, patient advocates have been an important part of the initiative. 

"From the beginning it was clear that people affected by cancer should contribute to generating the challenges at our ‘Big Think’ workshops, where we boiled down the biggest obstacles in cancer research into manageable questions for further thought and discussion,” says Dr David Scott, director of Cancer Grand Challenges. 

“Challenges on this scale were new to us, and having people affected by cancer to guide us and learn with us as part of the process was key to growing the initiative in the right direction.

Dr David Scott, director of Cancer Grand Challenges

Many of the original members of the panel were present at the ‘Big Think’ workshops, held in London and Edinburgh in 2015. The workshops brought together researchers from a variety of disciplines – including oncology, haematology, biology, chemistry, physics and engineering – with clinicians, industry experts and patient advocates, to discuss and debate the biggest barriers in cancer and ways to overcome them.

“It was like someone had walked in with a big box of Lego and threw it on the table and said, come on, make something out of this, and then we were bouncing lots of ideas off each other,” says Terry Kavanagh, one of the patient advocates present at the Big Think workshops and member of the Advocacy Panel until December 2022.

“I think it was the Big Think workshops that drove a lot of us – the patients – to become involved, because we were swept up in all the enthusiasm for the research.”

When Cancer Research UK Grand Challenge was launched, the Advocacy Panel was made up of 11 UK advocates. After Cancer Research UK and the National Cancer Institute in the US joined forces in 2020 to found Cancer Grand Challenges, the initiative grew and evolved, as has the need for involvement of people affected by cancer from across the globe. After welcoming seven new members in 2023, the panel now stands at 12 advocates from the UK, US, Canada, Italy and Germany.

Patient advocacy within the initiative is moving in the right direction, but we want to continue to build on the role that patient advocates play in Cancer Grand Challenges. To drive this progress, in January 2023, Cancer Grand Challenges introduced a new role of Patient Advocacy Manager. 

Together with the Advocacy Panel, they will work to find the best way to involve and engage people affected by cancer from all walks of life in the work of Cancer Grand Challenges. 

One way of doing this will be to increase communication between the Advocacy Panel and the patient advocates that are part of the research teams, from as early in the funding cycle as possible. 

For our newest round of challenges, members of the Advocacy Panel have worked closely with our shortlisted global research teams, providing feedback and guidance to each team on its proposed approach to involving advocates.

“The activities underway with the shortlisted teams are the result of the excellent foundation laid by the members of the previous Advocacy Panel,” says Margaret. “This foundation has been further built upon by the current panel members, each bringing their personal experience of cancer and their broad range of life skills and experience to work as a team with a clear vision of the importance of patient advocacy within the initiative.” 

“The panel conversations with the shortlisted teams will continue with the teams who receive funding, as a support and encouragement to both their patient advocates and researchers.”

Margaret Grayson, Chair of the Cancer Grand Challenges Advocacy Panel

With this work, we will build more opportunities for people affected by cancer to network, cooperate and share their experiences and achievements as well as further integrating patients in all areas of the initiative.   

“I’m proud of the progress we’ve made with embedding patient advocacy within Cancer Grand Challenges, which would not have been possible without the knowledge and guidance of our Advocacy Panel. I would like to thank all former and existing members of the panel who have helped us towards our mission of transforming outcomes for people affected by cancer,” says David.

Below, former members of the Advocacy Panel tell us what they have learnt and share some advice for others looking to get involved in patient advocacy for cancer research.

• Jim Elliott: “Take every opportunity that comes with this, it is the most incredible public involvement opportunity…because there isn’t any other funding like it.”
• Terry Kavanagh: “I’ve learnt so much from being part of the Advocacy Panel, which I’ve been able to use in a lot of other focus groups and projects for Cancer Research UK and other charities. I’ve become a lot more confident than when I first started in the panel.”
• Richard Stephens: “Don't think about it as joining a panel. Think about it more constructively. Cancer Grand Challenges projects are going on, there are loads of patient advocates working in them across the world, it's all about discovery science. What can you do to help those people? And actually, what do you hope to learn from your experience?”
• Jeremy Dearling: “Personally, my learnings were that it gave me a lot of confidence to be involved in PPI. I think if I wasn't part of Cancer Grand Challenges, I wouldn't have had the confidence to apply to other things that I’m involved with now. What Cancer Grand Challenges did was to make me feel that I knew what I was talking about, and that I had the confidence and the language to express that in a way that people would listen.”

We would like to say a huge thank you to former Advocacy Panel members Jeremy, Jim, Terry and Richard for their hard work and commitment to the initiative.

Article written by Bethan Warman and Andrea Delgado Garcia, with thanks to Jim, Terry, Richard and Jeremy for their input.