A decade of patient power: Shaping research, changing lives

Maddie Dichiu
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This year marks a special milestone – 10 years of incredible impact, insight and inspiration from the members of our Patient and Carer Research Panel (PCRP). Collectively, they are shaping myeloma research in the UK, their voices, ideas and lived experience ensuring it meets the needs of people affected by myeloma.

What is the PCRP and how can it support you? 

The PCRP was first developed in 2015 to make sure that the voices of patient and carers are heard in research, and to help make a positive change in the patient journey and experience. The panel, made up of a range of volunteers all affected by myeloma and related conditions, bring first-hand insight that means clinical trials, projects and grant applications can best reflect what is important to people affected by myeloma.

By involving the PCRP in your work, you can:

  • Strengthen patient and public involvement (PPI).
  • Enhance the relevance and quality of research proposals.
  • Ensure clinical trials are designed with patient priorities in mind.

The panel has supported researchers by reviewing grant applications, contributing to trial design, advising on patient-facing materials and acting as co-applicants on research projects.

Many researchers have benefitted from the panel’s input over the last decade. Dr Mark Williams describes his experience of how the PCRP enhanced his research application:

“I was very grateful for the panel to kindly provide their valuable time to participate in the shaping of my research application. PPI is vitally important in the research process and consequently should be at the centre of all research endeavours, from the conception of research studies through to their completion and assessment of impact. 8 patients contributed to this work and their important perspectives were used to shape and enhance all aspects of our research grant application, from the lay summary to the potential short and long-term impact/outcomes of the proposed research studies. On behalf of the research team, I would like to take this opportunity to sincerely thank all the panel members and Myeloma UK, for dedicating their valuable time and all their efforts to our research. This truly is a vital and worthwhile service.”

The process

We follow a due diligence procedure with each application, to make sure it is suitable for the panel. Panel members then choose if they wish to volunteer for the project.

Track record and achievements

With over 100 panel members, we have an excellent track record of successfully pairing researchers with the patient voice.

PCRP members have:

  • Become co-applicants on research proposals.
  • Supported teams to secure research funding.
  • Contributed to the delivery of a wide range of research projects.

We have also recruited 16 PCRP members to the UK Myeloma Research Alliance (UKMRA), the largest collaboration of myeloma researchers in the UK. All working groups of the UKMRA now have representation from PCRP members. Dr Rakesh Popat reflects on the importance of patient representation in research:

“Four years ago there was just one patient rep in UKMRA; there are now 16 thanks to a recruitment drive by the PCRP. Representatives join the main UKMRA meetings when research projects, planned trials and trials in progress are discussed. All the researchers, clinicians and scientists who attend the meeting understand how vital it is for the patient voice to be heard at the meetings. The reps are strongly encouraged to contribute to these meetings by putting forward the patient and carer perspective and this has had a positive impact on the way trials are designed. The UKMRA also has several Working Groups which focus on areas of concern to Myeloma patients such as Bone Disease, Frailty and EDI (Equality, Diversity and Inclusion.) The PCRP allocated representatives to the groups according to their experience and interest to ensure the patient voice adds value to the work of the group and that it is central to research. The support of PCRP has been crucial in the development of patient and carer representation in research into Myeloma in the UK.”

PCRP members also played a key role in shaping the Myeloma UK Research Strategy as Shelagh McKinlay, Director of Research and Advocacy explains:

“Here at Myeloma UK, we are committed to ensuring that the needs, priorities and preferences of people living with myeloma are at the heart of all our research. Members of the PCRP were invaluable in shaping our recently launched research strategy. Building upon insights from our Unmet and Emerging Needs research, we were able to explore further themes and ideas, ensuring we captured the priorities of people living with myeloma. However, that is not the end, we will continue to work with members of the PCRP in all our research activities.”

Find out more and get involved

If you are conducting a study, delivering a research project or have a grant application for review, the PCRP are here to help support you. Their input ensures your work reflects what matters most to patients.

If you would like to get in touch to discuss how the panel may be able to support your work, please contact research@myeloma.org.uk

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