Our Patient and Public Involvement Representatives
Ensuring the voice of the patient is central to the discussions and recommendations of the research studies proposed for funding.
Introducing our Patient and Public Involvement Representatives
Our patient and public involvement representatives generously volunteer their time to input the views of those affected by prostate cancer to the discussions and decision-making meetings about the research we fund.
Our patient and public involvement representatives are part of our Research Advisory Committee and Scientific Advisory Board who consider research proposals submitted to the charity for funding and makes recommendations to the Board of Trustees as to which applications should be funded by Prostate Cancer UK.
Our current 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 important to them.
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 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
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 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.
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 have experience of involvement in research or evaluating patient and public involvement in research grant applications.
- They are committed to representing the views of a wide range of people living with prostate cancer and respect differing viewpoints.
- 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 patient and public involvement 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 a handful 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 patient and public involvement representatives to help them with their work.
Below are the key things they do as part of the assessment of research applications received to our funding calls.
The patient and public involvement representatives read their assigned research applications and documents and prepare their review to discuss when they meet together.
Their review is focused on reviewing the lay 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 reviews of the research funding applications. They agree the key things to feedback to the applicant and questions they'd like to ask the scientific committee.
Their comments are collated to be shared with the scientific committee.
One or two patient and public involvement representatives attend and contribute to the point in the research funding process where the scientific committee make a recommendation whether the research should be funded by Prostate Cancer UK. 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.
