Patient and Public Involvement in Research

People affected by breast cancer can make a valuable contribution to your research design and delivery through:

• Joining advisory groups
• Sharing their experience and providing feedback and insight
• Doing a talk for your institution to connect patient experience with the work you do

We can also share research studies they may be able to participate in.

The community of over 800 members is made up of people whose lives have been changed by breast cancer, who want to use their experiences to support research studies and other projects, and includes:

• Current and former breast cancer patients
• People living with secondary breast cancer
• People who have cared for someone with or lost someone to breast cancer
• Those who have engaged with family history services

We email the whole network every month with PPI and other opportunities, and research studies they may be able to participate in.

We make it clear what it is we want from them and eligibility criteria for each piece of work, so they can pick and choose what to get involved with.

From time to time, the Voices team may be able to identify specific individuals or sub-groups who would be appropriate to approach more directly – for example, if you require a patient expert speaker.

The community can be accessed via the Breast Cancer Voices team, who will assess your request and, dependent on approval, arrange for it to be shared with the community. 

Complete our request form (includes further guidance on timelines and expectations)

Email us at voices@breastcancernow.org if you need help with the form or to discuss your requirements. 

Check out previous research studies we have shared with the community to see how we present these.

People who are experts by experience are a very powerful resource to enhance your project and achieve the best possible outcomes. If you would like to discuss methods for involvement or want to talk through your approach, you can get in touch with us at voices@breastcancernow.org. 

The following guidance can help you ensure you get the most out of this incredible resource:

• UK Standards for Public Involvement in Research
• NIHR Public Co-applicants in Research - guidance on roles and responsibilities (Apr 2021)
• Payment guidance for researchers and professionals - payment and recognition for involvement (Apr 2021)
• Cancer Research UK Patient involvement toolkit for researchers