1. Information about the project

This research project has been designed to get a better understanding of what makes clinical trials positive experiences for patients and what makes the negative experiences. It has also been designed to understand what could make clinical trials more accessible for those who have never been on them and to understand what the biggest barriers and challenges are with regards to patient participation.

We will talk to a range of different patients about their experiences. These discussions will contribute to creating solutions that can help make sure future clinical trials are designed with patients’ quality of life outcomes at their core.

This is a project which has been financed through an educational grant from the biotechnology company CellCentric. For transparency, we want to make it clear that in receiving this educational grant, neither we nor CellCentric are looking to induce or influence people with prostate cancer towards any product or company nor are we endorsing its use or their credentials

 

2. Why have I been chosen/asked?

You have been chosen because you are belong to one of the groups of people that we want to talk to and expressed a willingness to take part in a group discussion.

 

3. Do I have to take part and options for withdrawal?

Participation is voluntary and you can withdraw at any point.

 

4. What do I have to do?

You will be asked to attend an online group discussion organised and delivered by Prostate Cancer Research staff. The group will last about 1.25 hours and will involve up to 9 other participants. The group will be asked to share views and experiences on a range of issues related to the online survey on clinical trial design which was conducted in early March. We will be taking notes and video and audio recording the event and only the research team will listen back and transcribe key themes from the audio and video recording. Both the audio and video recording will be deleted after this project.

 

5. What are the risks associated with this project?

Your cooperation in this research will take up some of your personal time.

 

6. What are the benefits of taking part?

You will be part of a larger project that is aiming to ensure clinical trials of the future are designed with patients at heart.

 

7. Data protection & confidentiality

All information you provide will be securely kept on a password protected computer. No names or organisations will be identified within the research process. Data from any focus groups will be kept secure. Names and other identifying features will not be used in any reports. Any demographic information we collect and use will be used purely to provide context to any quotations in the report. Please read our Privacy Policy for more details on how we use and process your data.

 

8. What if things go wrong? Who to complain to?

If you have any query about the focus group you can speak directly with the research team or alternatively you may speak to Peter our head of Partnerships at pharrison@pcr.org.uk.

 

9. What will happen with the results of the study?

A report will be written and used to encourage our researchers and partners who design clinical trials to ensure that their future clinical trials are designed with the patient experience at the heart of their clinical trial design All data used directly from participants will be fully anonymised.

 

10. Key contact details

David James

Patient Involvement Project Manager

djames@pcr.org.uk

07890 565653

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