Did you know people affected by blood cancer help decide what research we fund?
23rd Jun 2022 - Siân Morgan
For the first time at Blood Cancer UK, this year a group of 16 people affected by blood cancer reviewed all applications received by us for research funding. The group, called the Patient Voice Grant Advisory Network, wrote 60 reviews between them, covering all eligible applications, and two members of the group also attended the Research Funding Committee meeting, where recommendations are made about what projects should be funded.
Why have we started to involve people affected by blood cancer in the review of research proposals?
Following on from the successful involvement of people affected by blood cancer in the development of our research strategy, in 2021 we started to introduce the involvement of people affected by blood cancer into the review of research project grant funding applications. Since then, we’ve started to roll this out further across all the research we fund, so that moving forward all research funded by Blood Cancer UK will be reviewed by members of the group.
As someone directly affected by blood cancer, having the opportunity to be involved with researchers really helps make their work relevant and useful for patients like me and our loved ones.
- Sunny Kharbanda, Patient Voice Grant Advisory Network member,
We believe the involvement of people affected by blood cancer in the process of funding research is of paramount importance.
Not only does it ensure we fund the research which matters most to people affected by blood cancer, but it also provides a vital opportunity for our community to directly feedback to researchers on their work. This ensures they involve people affected by blood cancer in the best way possible in the research project itself, so that we can beat this disease sooner, and focus on work that matters most to people affected by blood cancer.
How did we get people affected by blood cancer involved?
We recruited a group of 16 people affected by blood cancer to our new Patient Voice Grant Advisory Network, to review all research grant applications considered for funding.
Members of this network assessed several aspects of each application, including: the relevance of the grant applications to people affected by blood cancer; alignment with our research priorities; clarity of the plain English summary; and plans for involving patients and/or the public in the proposal or research project itself.
Great to feel part of achieving the goal of beating blood cancer.
- Vij Chauhan, Patient Voice Grant Advisory Network member
The written reviews produced by the Patient Voice Grant Advisory Network were sent back to applicants, having been anonymised, so that researchers could respond to all the comments made by the group. Sometimes it was about clarifying certain points and simplifying the science, but overall it is was great to see researchers incorporate new things into their work and make changes as a result of the feedback received.
For example, because of the feedback from our reviewers, one researcher reached out and has now got a patient – with the specific blood cancer being studied – involved in the design and development of their work. In another instance our reviewers helped to improve the language used by the researcher, to make it easier for their work to be communicated to people with blood cancer. And in many other instances the group shared advice and recommendation on how the project might be improved.
Patient contributions to research are a big step forward in making sure that the approach by clinicians and researchers is understood and relevant to the patient and carer community.
- Andy Deutsch, Patient Voice Grant Advisory Network member
Two members of the network also took part in the Research Funding Committee. In the meeting they represented the feedback from the wider network and shared this at the committee meeting. Alongside other committee members they also scored applications for funding.
What was the group's impact?
As mentioned previously, the group had a huge impact on improving and making changes to the research applications, in particular when it came to involving people affected by blood cancer.
Ultimately, because of the group's feedback we made sure projects funded were those that mattered most to people affected by blood cancer.
It felt like we were involved at every stage, before we started our Grant reviews, during the review process, and afterwards including the wrap up session, it felt like we had a voice as blood cancer patients
- Carole Waldon, Patient Voice Grant Advisory Network member
We’d like to publicly thank all the hard work from all 16 members of this year's Patient Voice Grant Advisory Network, for their constructive, insightful, and honest feedback on all the research projects. The time and effort they gave Blood Cancer UK in completing their reviews, and the feedback they have given us to help us make this process even better next year was hugely appreciated.
Moving forward, we'll continue to have written patient reviews on grant applications and have members of the Patient Voice Grant Advisory Network representing the group at the relevant funding or review committee(s).
Most of the group who reviewed research proposals with us this year want to continue and be involved in this work next year. We're likely to need a few more people to join the group, so please keep an eye out on the specific page for this group under ‘helping to shape our work’ for an update on this.
Because we've been beating blood cancer since 1960
We’re a community determined to beat blood cancer. We do this by funding research that takes us closer to a cure.