Brain Cancer Resources – printed or digital?
When can printed resources be better than digital?
In the field of cancer care and cancer care in general, in particular, patients welcome and even seek out support to manage their condition. But how should this support be delivered? In a digital world, resources to support patients should be comparatively cost-effective to create and maintain. Nonetheless, patient groups continue to invest in printed materials to support patients. Although printing and distributing materials is inevitably more expensive, it does:
- Give individuals a format that is easy to navigate and use
- Reach people who may be less comfortable with technical solutions
- Gain impact and usage because it is physical rather than virtual.
- Printed materials always have the reassurance for industry that once approved, they are fixed, rather than virtual materials which are at constant risk of change.
Quite simply, some may people feel that there is more value to these physical tools rather than digital information. We look at the experience of two patient organisations who bag and box resources for newly-diagnosed patients.
BAG IT
BAG IT is a US non-profit organisation which aims to help newly-diagnosed cancer patients cope with their diagnosis and treatment.
Patients can receive a bag contain three main items:
- A `navigation binder’, including forms to plan and record treatment, prepare questions for doctors, keep track of appointments, record side effects, and keep records of test results.
- A set of books, including guidance on managing chemotherapy, managing diet, and working with doctors.
- A USB wrist-band, enabling all the tools, forms and publications to be used electronically.
The content is also downloadable from the organisation’s website in English and Spanish. On their website, BAG IT’s founder explains her thinking behind the bag:
“I wanted to help make a change – to help empower others to become self-advocates and deal actively with the overwhelming fear that results from a cancer diagnosis. BAG IT was conceived to help Fight the Fear. It has evolved over the years and in different formats but always has retained its focus to help people and their families cope with cancer and engage in their care.”
- BAG IT, Founder, Sherri Romanoski
BAG IT works with some industry support, including from Eisai and Roche.
Brain box
The UK charity, brainstrust, has a vision “for everyone with a brain tumour to feel less afraid, less alone, and more in control.” The charity pulls together a set of resources for newly diagnosed patients in one box – the brain box.
The box includes printed tools, resources and books covering many aspects of the brain cancer patient journey, including how to:
- find out more about brain cancer, from diagnosis through to treatment
- find local and national support
- manage fatigue relating to brain cancer
- feel more in control of radiotherapy
- play an active part in their care pathway, and `who’s who’ on the clinical team
- talk with family and carers about brain cancer.
Many of these resources are also downloadable from the charity’s website, but the box plays an important role of making it easier for patients to keep and use all the materials in one place. It’s a recognition that although digital is not always enough on its own, websites play an important role in helping patients find and apply for the printed packs.
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