The Research Involvement Network
Have you been personally affected by blood cancer — as a patient, carer, family member or friend? Your experience could make a real difference to blood cancer research. At Blood Cancer UK, we believe research should be informed by the people it serves. That’s why we established our Research Involvement Network — a group of people with lived experience who help shape what research gets funded and how it’s done.
What is the Research Involvement Network?
The Research Involvement Network is a community of people affected by blood cancer who:
- review and feedback on research funding applications
- join focus groups with researchers
- help shape research questions, materials and priorities
- represent the views of people with lived experience at key decision points
- sit on our funding panels to help us decide which research projects to fund
- work with us to develop our Research Strategy.
Your voice helps ensure research is relevant, understandable and focused on what matters most to people affected by blood cancer.
Why get involved?
People join the Research Involvement Network for many reasons:
✔ make research better and more relevant
✔ ensure future treatments reflect lived experience
✔ learn more about research and how it works
✔ connect with others and contribute to meaningful change
Your insights can influence research funding decisions and help improve outcomes for future patients and families.
What you could do?
Examples of involvement include:
- Reviewing research summaries to ensure they make sense to non-scientists
- Taking part in online discussions with researchers
- Helping develop patient information materials
- Suggesting topics or concerns that matter most to people affected by blood cancer.
What does PPI mean to you?
My treatment took me off-work (and kind of ‘off-world’) for a long time. And ‘coming back’ I felt the urge to spend my energy contributing to something meaningful. For me, this goes beyond science and research, it’s about doing something for the patients and the families of the future in the hope that they won’t go through a similar ordeal. It’s not only about the condition or the treatments, it’s about people, their names, their stories, their lives, their hopes, which come entangled with it. (Research Involvement Network member)
Thank you so much for organising the session. We sat together for a while afterwards and digested everything that the group shared with us. We were incredibly moved to hear their stories and it was a privilege to be trusted with them.
There were also quite a few things that we learned about the side effects of treatment which we genuinely had no idea about. This will be incredibly helpful for the funding application we’re working on now and for our future research projects. (Researchers following a PPI session)
What you’ll get out of it
- Training and support materials so you feel confident taking part
- Networking with others who share your experience
Expenses and reimbursement for travel, time and support costs (e.g., childcare or online access). We follow the best practice guidance for payment for public involvement in research.
How to Join
If you’re interested in joining the Research Involvement Network, we’d love to hear from you — whether you want to help occasionally or take part in more activities. Contact our Research Involvement Manager, Lisa Whittaker [email protected] for more information. We’re here to support you at every step!