Prostate Cancer Research (PCR) aims to raise awareness of prostate cancer and use research to provide a better future for men and their families. You can find more information on the charity at www.prostate-cancer-research.org.uk
In the work they do around prostate cancer and patient experiences, there are 5 distinct problems that the Prostate Cancer Research Patient Project Team have identified:
- They all know a diagnosis of prostate cancer is life changing and bewildering. There is a lot of information out there but, if you are one of the almost half of the population with health literacy issues, the masses of written information are not the best way to help you understand and start to process things.
- They know the prostate cancer pathway is particularly complicated. There are often a number of different options, some only available in certain locations, with differing side effect profiles.
- Thet know that for certain populations, particularly the Black community, information rarely addresses their needs. It is rarely culturally relevant; their stories are not highlighted and their involvement in co-development is almost non-existent.
- They have heard from patients who tell them stories of being rushed into a decision by a medical professional. We know there is a huge power imbalance between patients and healthcare professionals – this can cause problems when the gap remains so yawningly wide.
- They know that men want to know about clinical trials earlier, but many people don’t know what clinical trials are or how they can find out more about them and the information is incredibly complicated. This means that some people miss out.
This year, the PCR has launched the Infopool, a new, interactive patient information, education and empowerment platform, to provide:
- A simple diagnostic roadmap - with easy-to-understand information on the different tests and procedures in the diagnostic pathway.
- An interactive treatment decision-making aid and comparative tool - to help people better understand their treatment choices depending on their stage of cancer and what treatments they might have had before.
- A library of tips and advice on living with side effects, from those with real experience.
- A prostate cancer clinical trial finder to help people access relevant information about clinical trials in a time and way that is right for them.
You can find out more on the Infopool at www.theinfopool.co.uk
If you have been diagnosed with prostate cancer or are the partner or family member of someone who has been, you can share your story here.
If you’re looking for information, have recently been diagnosed with prostate cancer or want to find out more, do not hesitate to get in touch with Prostate Cancer Research.