Research is better when it's done with people – not to them

When Teresa and Carole were diagnosed with different forms of lymphoma, neither imagined that one day they would be helping to shape blood cancer research.

At first, their focus was on getting through diagnosis and treatment. But afterwards, both wanted to use what they had experienced to help others.

“I wanted to give something back,” says Carole. “If I was going to volunteer my time, I wanted it to be somewhere that was really focused on research.”

Teresa felt similarly. “I’ve got these skills, I’ve got this experience. I’ll use it and I’ll try and find the best way of doing it.”

Today, they are both members of Blood Cancer UK’s Research Involvement Network, working alongside researchers and using their experiences to help make blood cancer research better.

For Carole, one of the clearest examples of why lived experience matters is the work she’s done with researchers to reduce their reliance on bone marrow biopsies.

Having experienced the procedure herself, she knows how painful it can be. So when she has reviewed research proposals involving repeated bone marrow biopsies, she has asked a simple but important question: are they all really necessary?

“On several research applications I’ve reviewed, I’ve questioned whether the number of bone marrow biopsies was medically necessary for participants or simply scientifically interesting,” she says. “It’s made some researchers reconsider how often they’re really needed.”

It illustrates something fundamental about involving people affected by blood cancer in research.

A researcher may understandably be thinking about the scientific information a procedure can provide. Someone who has experienced that procedure brings another perspective: what will this actually be like for the person taking part?

As Teresa puts it: “We bring the human perspective. It’s about making research more rounded.”

Neither Teresa nor Carole is a scientist – and that’s precisely the point.

Teresa spent her career in education and has found that those skills can be valuable when researchers are trying to explain complex science.

“I go into English teacher mode,” she says. “Research can be incredibly exciting, but sometimes that excitement gets lost in the language.”

Carole, whose background is in business consulting, brings different skills again. Being involved has also opened up a world of research that neither had previously seen.

“You realise just how much planning goes into every application, how collaborative research is and the amount of funding that’s needed,” says Carole. “It’s like lifting a veil and seeing what happens behind the scenes.”

For Teresa, that exchange of expertise is what public involvement should be about: “It means contributing to the direction of research whilst working alongside scientific experts.”

Both have also gained an enormous respect for the people carrying out blood cancer research. Teresa particularly enjoys meeting researchers early in their careers and seeing their enthusiasm, while Carole believes people affected by blood cancer can help researchers communicate the importance of their work to a wider audience.

They also want the relationship between researchers and people affected by blood cancer to keep evolving.

Carole would like people with lived experience to be involved right from the point when a researcher first starts developing an idea. Both would also like better feedback afterwards, so people who contribute know what happened to the research and whether their input made a difference.

Teresa hopes this develops into a genuine sense of shared understanding, with researchers and people affected by blood cancer bringing their different expertise “on an equal footing”.

This is why Blood Cancer UK has signed up to the Health Research Authority’s Shared Commitment to Public Involvement in Health and Care Research.

It is our public commitment to continue making involvement an important and meaningful part of research – and to ensure the voices and experiences of people affected by blood cancer help shape research from its earliest stages through to sharing its results.

We know there is more to do. But Teresa and Carole show what becomes possible when researchers and people with lived experience work together.

You don’t need to understand the science to contribute. As Carole says: “Your experience as someone affected by blood cancer is what you can contribute.”

Teresa hopes others will ask questions, find out more and speak to people who are already involved.

If you have experience of blood cancer, whether personally or as someone supporting a loved one, you can help shape the future of blood cancer research too.

Find out more and join Blood Cancer UK’s Research Involvement Network by contacting Research Involvement Manager [email protected]

Perhaps Carole sums up why this matters:

“Research will be better when it is done with people affected by blood cancer, rather than being done to us.”