Information is Power: A Digital Library for MBC Patients
PATIENT PERSPECTIVE

A new interactive portal for Italian-speaking women with metastatic breast cancer aims to be a one-stop-shop for information about the disease.
 

Women diagnosed with MBC typically have a lot of questions, and it’s not always clear where they can go for answers. That’s why the Italian arm of the European breast-cancer support organization Europa Donna decided to dedicate a full chapter of its new breast-cancer-focused interactive library to MBC. "This is the answer to the many questions women address to us," says Rosanna D’Antona, president of Europa Donna Italia, which has had a team of about 10 people working on the interactive library for over a year. "We want to put all the most relevant information for MBC patients together in an easy-to-read portal that’s accessible from any device."

The interactive library itself is a new project. Comprised of plain-language answers to patients’ most-frequently asked questions about a range of cancer-related topics, the library debuted in January 2016 and makes use of text, video and graphics to engage users. Patients are the main audience, but the material is also useful for medical professionals, family members and policymakers. The inaugural chapter of the "biblioteca interattiva" focuses on breast units - specialized, multidisciplinary centers for breast cancer care and prevention. European Union guidelines call for member countries to have at least one breast unit in place for every 300,000 citizens by the end of 2016. So far in Italy, says Ms. D’Antona, there are 80 such units; by the end of 2016, there should be up to 120. Since treatment in a specialized breast unit has been proven to raise patients’ chances of survival and improve their quality of life, "we felt it was very important to inform people – patients as well as their families and caregivers – about the excellent care that’s possible at these centers," says Ms. D’Antona.

The interactive library’s second chapter, focused on breast-cancer prevention, debuts in April 2016. Chapter 3, focusing on metastatic breast cancer, is due over the summer. "Women with MBC have unique informational and treatment needs. We want them to know they can come to our portal to find the answers to their  most pressing questions," says Ms. D’Antona. "Getting informed is the first step on the long journey of living well with MBC."