Patient and Public Involvement in Research

The network is made up of people whose lives have been changed by breast cancer, who want to help to shape and improve our work and contribute to the wider field of breast cancer by supporting research studies and other projects.

The network of over 2,500 members 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 service
   

People affected by breast cancer can make a valuable contribution to your research design and delivery – through joining advisory groups, sharing their experience, or providing feedback and insight.

We email the whole network every month with opportunities to share their views and experiences, and research studies they may be able to participate in.

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

From time to time, the Patient Experience 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.

We also post research studies on our Forum.

The network can be accessed via Breast Cancer Now's Volunteer Hub and Patient Experience Team, who will assess your request and, dependent on approval, arrange for it to be included in our communications with the network or posted on our Forum.

Complete our brief (includes further guidance on timelines and expectations)
Visit our Forum
Email us at voices@breastcancernow.org

There are lots of resources available to help you involve patients, service users or public in your projects or research.

People who are experts by experience are a very powerful resource to enhance your project and achieve the best possible outcomes. The following guidance can help you ensure you get the most out of this incredible resource.

• NIHR UK Standards for Public Involvement in Research
• NIHR resource for public involvement - Public Co Applicants in Research Guidance (Apr 2021)
• Reward and recognition for public contributors - a guide to the payment of fees and expenses (Apr 2021)
• Cancer Research UK Patient involvement toolkit for researchers

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.