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Patient and public involvement in research

Here’s how we involve people affected by blood cancer in making funding decisions, our expectations for grant applicants and grantholders, and the support we can offer researchers for Patient and Public Involvement (PPI).

Please note: this page is intended for researchers, if you are someone affected by blood cancer, help shape our work here.

We believe it’s important for grant applicants to involve experts through lived experience of blood cancer in the planning and delivery of research projects. It is mandatory that you seek Patient and Public Involvement (PPI) in your grant applications.

What is Patient and Public Involvement (PPI)?

Patient and Public Involvement (PPI) is the act of involving someone affected by a condition in a piece of work to help shape, or influence, aims, values and activities.

At Blood Cancer UK, we use the phrase “people affected by blood cancer” to describe anyone with a lived experience. This includes patients, carers, family members or friends of someone who has had or has blood cancer.

We strongly encourage all researchers funded by us to strive to develop meaningful involvement opportunities during the course of their grant funding.

As a minimum, all applicants should look to involve someone affected by blood cancer in the review of their plain English summary and ensure this is understood by a non-expert audience.

About our Patient Voice Grant Advisory Network

Patient Voice Grant Advisory Network is a group of committed people affected by blood cancer who review all grant applications considered for funding. Members of this network assess 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 Patient and Public Involvement activities.

Applicants see the patient review alongside the peer review and can address comments in their rebuttal responses. Members of the network are a key element of our decision making, and join the Research Funding Committee alongside the expert members to represent the wider network and feedback their views to the scientific experts on the committee.

What support is available for researchers?

We've created research guidance to help you begin to integrate PPI into your research work or proposal.

If you are applying to us, or another organisation for funding and would like to involve patients in: any element of your idea; proposal development; design; co-creation of applications; trial group, or any other aspect of research, please contact the Research team and provide as much of the below as possible:

  • Who are you?
  • Who is the funder, or proposed funder?
  • Is it specific to any one type of blood cancer?
  • Can you provide detail about what you are looking for the patients to add or bring?
  • How will the outcomes / results of their input be shared back with them?
  • What is the estimated time commitment?
  • What is your timeline for this request?

We can’t guarantee to match every request to connect researchers with PPI representatives, especially if it’s close to deadline date, but will do our best.

What impact will PPI have on your research?

Dr Pramila Krishnamurthy, King's College Hospital NHS Foundation Trust:

“Having patient and caregiver input into our research was critical to developing our project. As experienced clinicians, we felt we knew the main priorities and concerns of patients. However, through organising an event, we found concerns and ideas expressed by patients and caregivers we had not considered or expected.

They gave us fresh understanding of their problems and priorities, which were used to hone our research idea, so that it better reflected their needs and priorities – and we hope that our project findings will be significantly enriched as a result with greater direct value to our patients.”

Dr Daniel Hodson, University of Cambridge:

"To make sure we are doing the research that patients want us to do, we ask them. Patients tell us that they want us to develop new therapies for blood cancer that are more effective but better tolerated by patients. Therefore, research in my lab asks the question - what happens inside a cancer cell that does not happen in normal, healthy cells? Then we work out ways to block that process. This tells us new ways to kill the cancer cell without damaging normal healthy cells. This lets us develop new therapies that are more effective but better tolerated by patients."

Professor Alex Tonks, Cardiff University:

“I had an opportunity to discuss my research at a Blood Cancer UK Impact day. This was such a valuable experience, as I was able to speak with the patients, the public and fundraisers to discuss new potential research directions. Together we were able to improve existing ideas and provide a richer focus to areas that matter more to patients and their families. More recently Tom and Gill Jones, from the Blood Cancer UK South Wales fundraising branch, provided an essential viewpoint on my proposal and helped shaped the project.

Patient and public involvement and engagement are critical activities to any ongoing research, as it truly forms a partnership between the scientists and clinicians with those individuals who will most benefit from the research.”

Sunny Kharbanda, Patient Voice Grant Advisory Member:

“As someone directly affected by blood cancer, having the opportunity to be involved with Blood Cancer Research UK and the wider research community really helps make it relevant and useful for patients like me and our loved ones. Hopefully by developing more meaningful PPI, this will result in leading to better services, treatment, and care.”