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 four-five 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 volunteer for us, and why being involved in the assessment of the research proposals submitted to our funding calls is so important to them.
I have worked in the NHS for a number of years at a local and national level. Prostate cancer is very relevant to my family and over the years we have been involved in fundraising activities for Prostate Cancer UK.
From my experience working with clinicians and patient representatives I know that it is important to make sure the people on the receiving end of the benefits of research understand how it will benefit them, and for that to be communicated in a way they can understand.
I have a nursing background in haematology and oncology. Volunteering for Prostate Cancer UK has been a way for me to give back to the charity from the support and information I received when my late husband was diagnosed with prostate cancer. I have been volunteering since 2013 by giving awareness presentations, reviewing research lay summaries, and now as a PPI representative.
It is important that people who will benefit from research know the potential impact, and for researchers to know how to involve people affected by prostate cancer in their studies.
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.
