Join our patient representative network
The best research happens when men with experience of prostate cancer are involved in its design, funding and delivery. Get involved to help us support patient focused research into prostate cancer.
What is our patient representative network?
Our patient representative network (PRN) is a community of men and close family members, from all walks of life, who have been affected by prostate cancer.
They are volunteers who have personal experience of prostate cancer whether they are someone who has been diagnosed, or a partner, family member, or friend of someone who has been affected by prostate cancer.
The network supports researchers by advocating for the patient voice in research grant applications and ongoing projects. They increase the likelihood of research into prostate cancer benefiting people affected by it in the future. By encouraging and supporting researchers to involve patients in their research, we can ensure that the voice of those affected by prostate cancer is central to the design, conduct and dissemination of research.
We are particularly looking to involve Black men, or their families, as we recognise this is an under-represented group within our network. By having a diverse network that involves men from a variety of backgrounds, we hope to remove barriers to participation and ensure prostate cancer research has the potential to benefit all men.
Help make the patient voice heard by the research community
What involvement can look like
Opportunities to get involved can vary and you can choose what you want to get involved with, at times that work for you.
Many activities can be done virtually, although some may be in-person events.
Involvement in research can range from reading and providing feedback on summaries in a research proposal to participating in a research project steering group.
Opportunities may include:
- Sharing your story and experiences to inform research
- Reviewing research plans and providing feedback
- Participating in research focus groups
- Helping researchers plan how they'll share their research with men and their families
- Representing the views of people living with prostate cancer within the development and management of research projects
You can volunteer to help us support researchers with their involvement activities throughout the research funding process, from the pre-funding application stage through to ongoing funded research projects.
Researchers throughout the prostate cancer community can request input from our patient representative network at any stage in their research. They don't have to be seeking funding from us or be funded by us.
Key qualities of our patient representatives
- Lived experience of prostate cancer diagnosis and treatment, either yourself or indirectly through a family member
- Have an interest in science and research
- Demonstrate a commitment to representing the views of a wide range of people affected by prostate cancer
- Be willing to engage positively with an ability to listen to others and confidently express your own views
- Be willing to learn and develop, and to seek help if you come across issues you don’t understand
- Have a commitment to confidentiality
How our patient representative network works
The research team at Prostate Cancer UK work to support the prostate cancer research community, and part of that is helping researchers involve those affected by prostate cancer in their research.
Researchers get in contact with us about the opportunities they have to offer. We then contact PRN members with details of the opportunity, and if it's of interest, the network members can contact the researchers to make arrangements to get involved.
The work involved will vary for each project and opportunity. The opportunities arise as and when the requests are made, so it's an ad hoc commitment which means that network members can choose if it's a suitable and convenient time to get involved.
Dr Simmons is submitting an application to our Research Innovation Awards funding call, and would like to discuss their research ideas and plans for patient and public involvement with a member of our patient representative network. They have asked for a phone call or a face-to-face discussion if the patient representative network member lives locally.
We contact patient representative network members sharing the opportunity to discuss Dr Simmons' research ideas and patient and public involvement plans. We share a simple outline of Dr Simmons' project, the dates between when the opportunity is available, how much time a activity may take, along with Dr Simmons' contact details so our patient representatives can ask for any further information or express interest in the opportunity.
Patient representative network members email Dr Simmons to say they'd be happy to have a chat about Dr Simmons' research ideas and plans to involve patients and the public in their study. Between them they arrange a time which suits them for a call.
From the discussion, Dr Simmons makes changes to their research project based on the feedback from the patient representatives; incorporating their ideas and suggestions of how their research might impact people affected by prostate cancer. This results in Dr Simmons writing a strong research funding application.
