Join our patient representative network
Help us support patient focused research into prostate cancer
What is our patient representative network?
Our patient representative network is a community of people affected by prostate cancer. They are volunteers who may have a personal experience of prostate cancer whether they are someone who has been diagnosed, or they can be 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.
Help make the patient voice heard by the research community
Our patient representative network help increase the chance of research into prostate cancer benefiting people affected by it. 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.
What involvement can look like
Involvement in research can include the building, critiquing and improving research applications and 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. Input from our patient representative network is open to all researchers in prostate cancer community whether they are seeking funding, funded by us, or another funding body.
Key qualities of our patient representatives
- Have an interest in science and research
- Demonstrate a commitment to representing the views of the wide range of people living with prostate cancer
- Be willing to engage positively, and to challenge where necessary
- 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 contact us about opportunities, we contact patient representative network members with details of the opportunity and if of interest the patient representative network members can contact the researchers to make arrangements.
The work involved will vary for each project and opportunity. The opportunities arise as and when the requests are made, so it is more of an ad hoc commitment which suits the members time commitments and capacity at the time of the request.
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 a handful of 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 call may take and 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.
