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Information and Patient Support
For MBC patients, information and support are often one and the same. The 2 main sources
of information for MBC patients are electronic and print. Other “live” sources include
conferences, telephone helplines, and webinars.

Between 2006 and 2013, the Alliance’s advocate members developed a variety of educational
materials about MBC. This information is featured on 12 websites as well as in over 40 print
documents, 8 posters, 8 telephone and 7 online support groups, nearly 40 blog posts, 17
videos/television clips, more than 20 first-person stories, 19 webinars, and 78 conferences and
workshops. Industry members among them have 5 unbranded disease-based programs and 6
disease-state programs.

Websites
Websites are a main source of information. Figure 10 shows findings on the usability of
advocacy member websites. On the scale of 1 to 10, the overall mean across the 16 members
was 5.7, with overall means for the individual score categories—attractiveness, ease of
navigation, MBC information, evidence for the information given, and recency of updates—from
3.4 to 6.9. Some sites offer multiple languages and 1 allowed users to create customized pages.
Most of the sites are not modern or designed with the end user in mind.
Figure 10: Usability of Advocacy Member Websites (on of a scale of 10, with 10 being
the best and 0 being the worst)

attractiveness
(6.5)

ease of navigation MBC information
(6.5) (3.4)

recency of updates evidence for information
(6.9) (5.1)

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