Our Patient and Public Involvement Representatives
Ensuring the voice of the patient is central to the discussions about which research we fund
Help us decide what research to fund
Our Patient and Public Involvement Representatives (PPI Representatives) use their lived experience to make sure men affected by prostate cancer are central to the discussions about the research studies submitted to us for funding.
PPI Representatives are part of our scientific committees. The committees meet to consider research proposals submitted to the Charity for funding, and recommend to the Board of Trustees which research we should fund.
We run three funding schemes each year, with different levels of participation required from our PPI Reps, at different timepoints in the year. As a PPI Rep, you are not expected to participate in every funding round. There is a time commitment required (usually around three meetings per year), with preparation needed before the meetings. Meeting are usually virtual, with one annual in-person meeting in the Spring.
In recognition that this is a public contributor role and as a gesture of thanks and appreciation, we offer payment to PPI reps in line with our payment for involvement policy.
Introducing our Patient and Public Involvement Representatives
Our Patient and Public Involvement Representatives have shared why they work with us, and why being involved in the assessment of the research proposals submitted to our funding calls is so important to them.
When my late husband was diagnosed with advanced prostate cancer I received excellent information from the Prostate Cancer UK website, the online community and the specialist nurses. It is important to me to use the information I gained and I have been an awareness and support volunteer with Prostate Cancer UK since 2010.
There have been many advances in treatments in recent years and it is so important to diagnose men early when outcomes will be so much better. It is a privilege to be involved and represent the patient voice.
My husband was diagnosed with prostate cancer age 52. He had surgery with the objective of cure but a year later tests showed that the cancer had spread. He underwent a range of treatments until the dreaded day when he was told “there is no other licensed drug available”. Fortunately he was then entered into a clinical trial of a new drug which both prolonged his life and significantly improved his quality of life. However, that drug eventually stopped working and he died just less than 5 years after his diagnosis.
I’m passionate about research which will mean other men and their families don’t have to go through what we went through. It’s humbling to be involved with world leading prostate cancer researchers and very rewarding that they take on board feedback from our patient panel. Research is where hope starts.
For 20 years I was a teacher, then senior manager, in secondary schools in Northumberland and North Tyneside. I left this work to run an Employment Department project to promote more flexible approaches to teaching and training, which I converted into my own company. Contracts included helping to design schools for the Building Schools for the Future programme and running European projects aimed at harmonising educational thinking and actions.
Back in 2010 I was diagnosed with prostate cancer but fortunately I was one of the ‘lucky ones’, following laparoscopic surgery I have been clear ever since and determined to give something back. On behalf of Prostate Cancer UK, over the years I have been involved in giving awareness talks, fundraising as the organiser of an annual golf tournament and being the PPI rep for a wide range of successful prostate cancer research projects.
I am a retired university librarian and Anglican lay minister. I was diagnosed and successfully treated for prostate cancer in 2003, and was a founding member of the Nottingham Prostate Cancer Support Group. I have been volunteering for many years, especially in the field of research. I am also a patient representative on a number of trial management groups.
Involvement in research is vitally important because too many men die of prostate cancer. Diagnosis and treatment have changed beyond recognition in twenty years. The more research we do, the greater the change in the next twenty, and fewer men will die needlessly.
I graduated in bacteriology and spent a number of years as a postgraduate before embarking on a career in teaching. My father died from prostate cancer. This led to my having annual PSA tests which resulted in my diagnosis. I have been involved with a range of volunteering activities with Prostate Cancer UK including participating in focus groups and reviewing lay information sheets.
Involvement in research is important because it ensures that the research is focused on what is important from the patients' viewpoint. I feel privileged to be able to gain an insight into the vast range research which is going on. The research, particularly that concerning early diagnosis and treatment of advanced disease, could lead to huge benefits for patients
Key qualities of our patient and public involvement representatives
- They have personal experience of prostate cancer, whether they themselves have been diagnosed or they are a partner, family member or friend of someone affected by prostate cancer
- They are committed to representing the views of a wide range of people living with prostate cancer and respect differing viewpoints
- They have experience of involvement in research or evaluating research grant applications
- They enjoy learning about science and research
- They understand the importance of confidentiality in relation to the discussions and the research funding applications they review
What our patient and public involvement representatives do
Our PPI Representatives discuss the feasibility and practicality of the proposed research from the patient perspective and ensure that patient involvement and experience have been appropriately considered within the development of the projects.
They give their time to prepare for and attend meetings throughout the year to discuss the applications we receive to our funding calls. We are on hand to provide support and relevant training for our PPI Reps to help them with their role.
Below are the key things they do as part of the assessment of research applications received to our funding calls.
The PPI representatives read their assigned research applications and documents and prepare their review to discuss when they meet together.
Their review is focused on several aspects of the applications including reviewing the plain English summary, patient & public involvement plans, the patient experience (for clinical research only e.g. a clinical trial) and the dissemination of findings to patients and the public.
The patient and public involvement representatives meet to discuss their thoughts about the research funding applications. They agree the key strengths and weaknesses, from a patient perspective, to be fed back to the applicant and the scientific committee.
Two or three PPI representatives attend and contribute to scientific committee meetings to help make a recommendation on what research we should fund. This may be:
- A committee meeting where the applications are discussed, and the attending representative/s will share the collated comments from the patient and public involvement meeting.
- Or the representatives may attend the interviews of the researchers who have applied for funding and have the opportunity to ask the researcher/s questions relating to the patient and public involvement elements of their application.
