How Voices are improving our health information

Involving people living with and beyond breast cancer improves the quality of our information. They help us to spot what isn’t working, add helpful information and tips, and include supportive and relatable quotes.

Supporting our information reviews 

We currently have almost 100 information booklets and leaflets, as well as over 200 health information pages on our website. Our information covers a wide range of topics – from specific treatments and their side effects, to coping with the practical and emotional impacts of a breast cancer diagnosis. 

Each piece of information is reviewed and updated every 2 to 3 years, with input from our nursing team, external healthcare professionals and people affected by breast cancer. 

Breast Cancer Voices have help us review and update lots of our health information, including:

• Breast cancer in men
• Breast cancer in younger women 
• Fertility and breast cancer treatment 
• Decorative tattoos after breast cancer surgery 
• Breast cancer and hair loss

Sometimes, Voices’ families can get involved too. For example, we’re creating new information for partners of people living with secondary breast cancer. As part of this, partners of Voices with secondary breast cancer are kindly reviewing the information for us and giving us feedback. 

Breast cancer and hair loss 

We're currently updating our information about breast cancer and hair loss. This includes a booklet and several webpages. 

How did Voices get involved?

We sent a survey to Voices to gather their thoughts and experiences with hair loss and tips for managing it. An incredible 60 people responded, giving detailed answers to help us identify gaps in our information. And they gave us some inspirational quotes to include in the booklet.

For example, many people told us they weren’t prepared for the impacts of losing nasal hair due to chemotherapy treatment. Some respondents wrote about struggling with a drippy or sore nose. Thanks to this, we're adding information about nasal hair loss to our booklet, along with some tips for managing the effects.

Voices also gave us some great tips that worked for them, like:

• Using a silk pillowcase
• Wearing soft bamboo or cotton caps to sleep in
• The best products for recreating eyebrows and eyelashes

We also asked Voices if seeing videos of people affected by hair loss on our website would be helpful for them. The answer was a resounding yes. Over 30 people told us they're interested in taking part in a video, photoshoot or magazine interview in the future.

Next steps 

We’re now editing our written information to include feedback from the Voices. We're always looking for ways to enhance our information, so we're also looking into adding video content for our hair loss information pages. Keep your eyes peeled.

How do I get involved? 

We share specific opportunities to get involved in health information projects through our Voices bulletin. It might be joining a focus group, answering a survey or taking part in an interview. 

You can also become one of our reviewers. This involves sending us your feedback on our health information. Having people affected by breast cancer as reviewers helps us make sure our information meets people’s needs and is as informative, useful and supportive as possible. 

If you’d like to be a reviewer, we’d love to hear from you! You can get in touch with us at health-info@breastcancernow.org

Thank you

We’d like to say a huge thank you to everyone who gets involved in our health information projects. Your feedback and personal experiences are so valuable to us and help us improve the quality of our information.

Your contributions directly impact people affected by breast cancer who need information and support about their diagnosis, treatment options, lifestyle and wellbeing. So thank you.