Informing a clinical trial into secondary breast cancer

What’s the project about?

The NIHR’s Patient Engagement in Clinical Development (PECD) service works with companies in the pharma and life science sector to help them effectively involve people living with health conditions in designing and shaping commercial trials and research.

They’re working with a company to help them improve their planned research into secondary breast cancer. The company is looking for people who are willing to share their experiences of living with or caring for someone with secondary breast cancer in an online group discussion.

This will help them to design a study that is focused on the needs of people living with secondary breast cancer, their families, and their communities.

Who’s organising it?

Name of project lead: Isabella Darbyshire

Job title: PECD Service Coordinator

Organisation: National Institute for health research

Who can take part?

You can take part if you:

• Are living with or care for or are a family member of someone living with secondary breast cancer
• Are happy to discuss their lived experience in a group
• Can access and use an online video calling platform such as Zoom
• Can access and use a word processing programme such as Microsoft Word to read the documents and fill out a feedback form

Why do you want me to be involved?

A someone directly affected by secondary breast cancer, you are an experts in the conditions. You can truly tell the researchers if they’re achieving the right balance between the ‘ask’ of the research, and the burden of living with a condition or disease.

By sharing your experience, you can help the company can grow their understanding of their general needs and preferences, and how those may translate into a clinical trial scenario.

What will you ask me to do?

If you’re interested in taking part, please complete the application form. If you’re selected for the activity, you’ll be invited to take part in an online group meeting which will last for 2 ½ hours.

The meeting will take place in November, but a date hasn’t been confirmed yet.

The meeting will be hosted by the NIHR PECD Team, together with the company they’re supporting.

The session will involve:

• Hearing about the impact secondary breast cancer has on your life
• The company talking to you about their planned research
• Sharing your thoughts and feedback on the planned research

You’ll also be asked to read draft versions of documents that would be given to patients being invited to take part in the study and share your thoughts on how clearly the information is presented.

They want to make sure that the materials are informative, accessible, engaging and fit for purpose, and that the language used is appropriate for potential participants and carers.

How do I get involved?

If you’d like to take part in this opportunity, please complete the application form.

When’s the deadline?

31 October 2024