Keeping our Understanding Cancer information booklets relevant

18 April 2019 | Cancer Council NSW

The Understanding Cancer booklets are our most widely read cancer information resources. Spanning a huge range of cancer topics, the 50 booklets in the series can be found in hospitals and treatment centres across the country. They can also be requested via our 13 11 20 Cancer Information and Support Service, at regional Cancer Council offices or you can download digital copies for free here.

But who reads hard copy booklets anymore when there is so much information readily available online? Well, you might be surprised to find out that last year we distributed just under 200,000 cancer information resources across NSW. People tell us they find our Understanding Cancer booklets to be an easy to understand source of information about cancer and that the booklets help them make sense of what their doctor has told them. The time surrounding a cancer diagnosis can be incredibly taxing for the person with cancer and their loved ones, and scouring the internet for information can be a daunting prospect, especially when it can be difficult to assess whether what you find is trustworthy. Our booklets provide an accessible and reliable source of information that can be easily shared and discussed with loved ones.

However, in order to ensure the information in the booklets is as current and accurate as possible, we need to constantly refresh and update every booklet. As such, each booklet is fully reviewed every two to three years, with the review process taking up to six months to complete. This rigorous and regular process is what underpins the reliability of our Understanding Cancer booklets.

As a booklet comes up for review, the editor goes through the content with a fine-tooth comb, checking for areas of information that need updating or expansion, as well as ways in which the reader experience can be enhanced. All Cancer Council information is based on evidence, so a large part of the editor’s role is to look at recent research and changes to clinical practice to inform the new edition.

Once the first draft is finished, it is sent to an external review panel with specific expertise and experience in the topic area. The panel is different for each booklet and each edition, but usually includes an oncologist, radiation oncologist, surgeon (if relevant to the cancer type), specialist nurse, relevant allied health professionals, and an oncology professional from the Cancer Council 13 110 20 Information and Support service. A non-clinical person with personal experience as a patient or carer is also brought onto the review panel to ensure the booklet addresses their information needs in a way that they can relate to. Because the booklets are national Cancer Council resources, the review panel is drawn from around Australia, and representatives from other state and territory Cancer Councils also review the draft to ensure the information is locally accurate.

The editor then compiles feedback from all reviewers, considering sometimes hundreds of suggestions, into a final draft of the booklet.

Each Understanding Cancer booklet contains a case study that reflects the personal experience of someone affected by cancer. So around this stage of the process, the editor interviews someone and their story added to the draft. The story will usually focus on a particular aspect of their cancer experience – such as their experience of the treatment or how they managed side effects – to provide a more personal perspective.  

Once the content is finalised, it is sent to a graphic designer who adds illustrations and infographics and lays it out in the booklet style that you will eventually see in the hospital information stands. After the design is complete, the final booklet is checked and approved by a lead clinical reviewer and representatives from state and territory Cancer Councils before the new edition is printed and shipped across the country.

If you or anyone you know is affected by cancer, be sure to keep an eye out for the Cancer Council information stands at treatment centres. Alternatively, don’t hesitate to call 13 11 20 and request to be sent some booklets. As you’ve just read, you can rest assured they will contain information you can trust.