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Patient and Public Involvement in Research

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.

In 2021 we reflected this by adding a question about involvement and engagement in our project grant application form.

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).

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

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 involvement opportunities into our project grant funding review process.

We recruited a group of 16 people affected by blood cancer to our new Patient Voice Grant Advisory Network, to review all 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 Patient and Public Involvement activities.

Written reviews were sent to applicants for a response and two members of the network also took part in the Research Funding Committee to represent the wider network and feedback their views to the scientific experts on the committee.

Moving forward, we will 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).

In 2021/22 Patient Voice Grant Advisory Network members were asked to complete the following form, to provide feedback on each proposal – download and view it below for an idea of what to consider in your proposal:

What support is available for researchers?

We’ve created this document to provide lots of relevant resources to help you integrate PPI into your research work or proposal:

If you are applying to us for funding and need to be connected with a Patient and Public representative to be involved in your work, please contact the research team at Blood Cancer UK on [email protected] with a role profile or description for the patient representative opportunity, to include:

1) Timelines and plans for the involvement opportunity

2) Support and training you will provide throughout the engagement opportunity

3) Time commitment required

This should be a maximum of two pages long.

Please note we cannot assist all requests to connect researchers with PPI representatives, and so if not in relation to an application for funding from Blood Cancer UK or a grant that we currently fund, we will not be able to assist with your request.

What impact will PPI have on your research?

“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 Pramila Krishnamurthy, King's College Hospital NHS Foundation Trust

"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."

Dr Daniel Hodson, University of Cambridge

“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.”

Professor Alex Tonks, Cardiff University

“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.”

Sunny Kharbanda, Patient Voice Grant Advisory Member