Patient Voice-keeping our research relevant

Patient-centred Research

Our mission is to save lives and improve quality of life for men with prostate cancer. The research we fund must be influenced by what patients need.

The survey included with the last issue of Lifeline helped us to understand what you want. Thank you to the 204 people who answered. We have always understood that most of our supporters come to us having been affected by prostate cancer in some way. We learned that finding and testing new prostate cancer treatments was the kind of research most of you thought should be our top priority. This was followed by clinical trials, improving medical imaging and reducing the side effects of current treatments. Those who wanted to get involved in helping us select our next research projects generally preferred to read short descriptions of each potential project, written in simple, everyday language. People felt that telephone helplines, printed information booklets and peer-support groups were important for people affected by prostate cancer. You can read more about our survey results on our website at www.pcr.org.uk/pcrc-survey-response.

We spoke to a number of men who have or have had prostate cancer, and some of their family members. They told us about how they were diagnosed, how they selected their treatments and what they have experienced, including the side effects of treatments, the support they received from their families and the care they received from medical teams. We have also been extensively researching what other charities do, and what private healthcare companies do, to make sure they are listening to patients.

The types of research supporters said we should fund ranked by priority

The support types you thought were important for people with prostate cancer

 

We are now thinking about the best way to implement everything we have learned.

In May, a group of patients and their family members read short descriptions of the projects that have applied to us for funding, and met to discuss these projects. Their feedback will be an important part of our final decision on which research to fund. Feedback from this patient group will also shortly be sent directly to the applicants to help them make future applications more relevant to patients.

There are other ways you can help people affected by the disease, or simply learn more about our work, by getting involved with us. You could:

  • read and comment on our patient information booklet or research strategy to make sure they are the best they can be
  • help us review our current research findings
  • meet our scientists and our staff
  • share your story in this newsletter
  • act as an ambassador by sharing your story elsewhere

Some of these activities will involve travelling to meetings, in which case we will cover expenses.

It’s important to say that no special knowledge is needed to take part in any of these activities. Complicated terminology will be kept to an absolute minimum, and we should be available to answer any questions you have. For more information, email patientvoice@pcr.org.uk or write to us.

 

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