Published: 18 July 2025

By Lisa Whittaker, Research Involvement Lead at Blood Cancer UK and Gemma Winsor, Research Involvement Manager at Versus Arthritis

At Blood Cancer UK and Versus Arthritis, we believe that meaningful research starts with meaningful involvement. That’s why we recently teamed up to support Dr Mark Bishton, Clinical Associate Professor at the University of Nottingham, in the development of a funding application to Blood Cancer UK exploring the potential links between inflammatory diseases and blood cancers.

Mark’s proposed research aims to investigate why people with conditions such as rheumatoid arthritis or lupus may face an increased risk of developing blood cancers like lymphoma or myeloid cancers. Using anonymised data from the Clinical Practice Research Datalink (CPRD), the study would examine how factors like medication use, ethnicity, geography and age may influence this risk, with the ultimate goal of developing a risk prediction tool to support earlier detection and tailored care.

To ensure this research was shaped by the people it aims to benefit, we co-hosted two focus groups: one with people affected by blood cancer, and another with people living with inflammatory disease. What followed were powerful, open conversations that highlighted just how essential lived experience is—and how valuable it is to collaborate across disease areas.

“Tell me why this matters”

One of the most consistent messages we heard from both groups was the importance of making the research purpose clear and relatable from the outset.

“What I was searching for all the time is what is the end result? How are you hoping that this will improve the lives of people with blood cancer?” – Janice

“Tell me why you want to do this, why it’s so significant, and why we need to do it now.” – Teresa

This feedback led directly to improvements in the project’s plain English summary, including suggestions to use bullet points and visual aids to make the objectives easier to grasp for a wide audience. As one participant put it:

“This is an exciting project. And I think it deserves to be made to feel exciting as well.” – Teresa

Lived experience brings new insights

Many participants drew on personal stories to highlight the relevance of this research. Their experiences brought to life some of the complex challenges that data alone can’t always explain.

“I’m convinced my arthritis has got considerably worse… and it doesn’t seem to be talked about much with multiple myeloma.” – Tim

“It would have been fantastic when I was so ill with Epstein-Barr… to know it could lead to lymphoma. Instead, it took months to find out I had stage 4.” – Teresa

This kind of feedback prompted Mark and his team to reflect more deeply on the role of delayed diagnosis, the long-term safety of biologics, and how gender, ethnicity and geography might all play a part in patient outcomes.

“I cannot imagine the double burden of blood cancer and inflammatory disease… My mother had rheumatoid arthritis. She spent most of her days in pain.” – Janice

Collaborating across conditions—and organisations

As PPI leads from different charities, this project was a valuable opportunity for us too. By working together, we were able to support a broader, more inclusive engagement process and help connect researchers with the right people from both communities.

“PPI isn’t about dumbing down the project… it empowers the team to think clearly about what they want to achieve.” – Teresa

“To follow something through would be very exciting, to be quite honest.” – Janice

The idea of charities working together on joint PPIE work resonated with participants as well:

“The PPI collab seems such a good idea! We need to see more of this between charities/different disease areas!” – Ellie

“As someone with psoriatic arthritis, I often have to rely on rheumatoid arthritis research and just hope it’s relevant – it’s great to see this broader approach.” – Katherine

Looking ahead

Several people have already expressed interest in joining the study’s management group or becoming co-applicants on the grant. Others want to stay involved in future stages of the research. Mark has taken on board the feedback to shape the grant proposal—and, we hope, the project itself if funding is secured. Following the focus groups Mark said:

“Speaking to patients in focus groups is challenging but in a positive way; some are almost professional PPI and want to understand the detail or have already drafted changes to the lay section, while others may be joining for the first time and need to be guided through the core reasons for conducting the research. Regardless, I am yet to be involved in a focus group session that hasn’t provided me with some enlightenment or one that hasn’t made me reflect on why patient input throughout the entire grant application process adds huge value.”

As one participant summed up:

“It’s not about ticking a PPI box—it’s about being clear on where you want to go, and why. That helps the scientists, too.” – Teresa

We’re proud to have supported this cross-condition collaboration, and we’re excited to see more researchers and charities working together like this. When we combine perspectives, we don’t just improve individual research projects—we build better understanding across the board.