Why the voices of people affected by cancer are critical to our work, now more than ever

From the first moments of taking on my role as director of information and involvement at Cancer Research UK, I knew how important the insight people affected by cancer was to our work.

Having been at the charity for 3 years previously, I’d had the privilege of seeing first-hand the impact of patient involvement. The impact became even more apparent when interviewing for my current role, where I had my first conversation with a patient representative. Margaret was kind, professional and posed some thought provoking questions and was very much part of the decision to appoint me.

It was one of the many memorable discussions with members of our amazing patient involvement network, which is celebrating its 5th anniversary this year.

Over the past 5 years, people from all over the country have shared their experiences of cancer with us to help shape Cancer Research UK’s work.

To everyone who has given up time to support us in the last 5 years, thank you. Your work has made a real difference to the lives of thousands of patients and their families. And in an ever changing world – your work has never been more important.

What is patient involvement and why is it important?

Before I dive into some highlights, here’s a bit of the history.

In 2014, we set out a strategy aimed at changing our approach to ensure we‘re meaningfully involving people affected by cancer in all aspects of our work. We’re an organisation that exists for people with cancer. And, in order to do our work well, we also need to be driven forward and held accountable by people with lived experience of cancer.

We now routinely consult, collaborate or partner with people affected by cancer right across the charity. This insight helps to ensure the research we fund is relevant, our brand and advertising campaigns resonate, the information we offer about cancer is accessible and our policy calls put your interests front and centre.

Members of Cancer Research UK’s Cancer Insights Panel. Taken before COVID-19.

Sometimes, the discussions we have are difficult, but we try to embrace these moments because even when conversations are challenging, they have value and give us insight. Because we know that involving people with cancer not only improves our work, it increases the transparency of our decision-making and ensures we’re meeting patient needs.

Celebrating 5 years of working together

Our network members are amazing, and we’ve done some brilliant work together. Personally, I feel incredibly proud and privileged to be working with our involvement network and to be part of an organisation that strives to puts people affected by cancer at the heart of what we do. Here are some examples of the work we’ve achieved together.

Reviewing our content

Our network has reviewed our online health information, playing a valuable role in shaping our content and making it accessible to the people who can benefit from it the most. Each month, more people with experience of cancer sign up to help us with this task.

Getting feedback from our content reviewers is a crucial step in creating Cancer Research UK’s health information. We use their opinions, alongside the most up to date scientific evidence and expert input, across our webpages and leaflets. We are incredibly grateful for their dedication to helping us make Cancer Research UK resources the very best they can be.

– Amy Hirst, health information officer

To find out more about helping us in this way, you can read Yo’s story.

Your Cancer Treatment Record

People on the network also helped us develop a booklet called Your Cancer Treatment Record for people going through treatment, which has been used by patients across the UK. Using people’s own experiences, the network’s input made the record more patient centred, more relevant and accessible.

Cancer information designer Kate Firestone worked on this project. She said,“Involving people affected by cancer helped us understand the key issues, such as whether the most important information is easy to find and shaped the tone of voice and our use of images. Gaining feedback was essential as we wanted the record to be assessible to a wide audience, not just those with higher literacy skills.”

You can read more about how people affected by cancer helped shape this work on our website.

Reviewing our research portfolio

In July, we involved some patient representatives in a review that assessed the challenges faced by our clinical trials studies as a result of COVID-19. Patients’ views shaped both the review process itself as well as influencing the decisions made about future funding for the trials.

Having the patient’s perspective was essential as decisions made as part of the review could potentially impact on those patients already recruited to trials, but also future cancer patients.

– Cancer Research UK’s lead research nurse, Anne Croudass.

You can read more about how people affected by cancer were involved in this review on our website.

These are just a handful of ways in which people have helped shape our work. You can read more stories of how our network members have been involved on our website.

Why your insight is more important than ever

It’s fantastic to look back at what the involvement network has achieved over the last 5 years, and to think what we can achieve together in the next 5. Now, more than ever before, we need to work together.

The global pandemic is putting a huge strain on vital patient services and our ability to carry out our work. We’ve seen our fundraising fall and the effect the pandemic has had on cancer services, trials and research. But while COVID-19 has slowed us down, we will never stop.

With our resources reduced, we need to make sure every penny and every minute counts. We can’t afford for our work to not be effective or relevant. Throughout the pandemic, we’ve continued to run our involvement activity virtually, and have many opportunities to get involved. This has been so important as we need your views to ensure we hit the mark from the start.

We’ll continue to focus on and prioritise patient involvement as well as work towards creating an inclusive environment that encourages the involvement of all people affected by cancer.

As Phil Almond, director of fundraising and marketing explains, “We’re putting insight and audience needs at the heart of our decision making. This will enable us to respond to a changing world, to better meet our audiences’ needs and ultimately improve our performance so that our work can better serve the needs of people affected by cancer and save more lives.”

You can find the current opportunities on our website.

We’d like to say a big thank you for the time, passion and commitment all our network members have shown over the last 5 years. We’re looking forward to working with our existing and hopefully new members of our network in the future. Together we will beat cancer.