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Discussion

Providing accurate, up to date, comprehensive, and relevant (to the person seeking it)
information and support services on MBC is challenging. Over time, patients move from
“There is a lack of diagnosis into a series of treatments until medicines and therapies no longer work. Over the
of information on
new drugs, current course of their disease, information needs change, usually prompted by a change in treatment
clinical research, or life circumstances. Patients seek information about their disease subtype and their
advanced demographic. Caregivers have different information needs as well.
directives, end
of life care, and This analysis found that Alliance advocate members provide high quality information and
monitoring support services to MBC patients and their families. However, information provided by the
treatment.” Alliance members requires that patients have relatively high health literacy and be Internet
MBCA Landscape savvy. Organizations must consider how to reach these people and other subgroups of the
Analysis - web
content analysis, MBC patient population. Unfortunately, quantitative data on the demographics and numbers of
Pamela Miller 2014. people who are accessing the programs and services is not consistently collected. As a result,
the profiles and needs of the patients who are and who are not accessing the information and
support are unknown.

While the disease-state websites of industry partners is comprehensive, the information is
hard to find for patients not using the product/drug. There is a duplication of patient support
tools across the websites such as treatment planners, discussion guides, accessing community
groups. Similar to the advocate organizations, data are not collected on the patient using the
Notable end of life websites. Without understanding who the user is and what types of information they seek and
sources: value, it is difficult to know how to make the sites more useful.

Cancercare.org:
Caregiving at the The majority of nonprofits report that their programs and services are underutilized. This may
End of Life (2011) be because people are not aware of the advocacy organizations and where to find information
or are finding support in other places. Because members offer so much general information, it
Susan G. Komen is difficult for individual patients to find what they need.
on Advanced
Directives Persistent gaps in information include detailed information on the latest treatments;
ww5.komen.org/ monitoring of treatment, including for side effects and quality of life; palliation; and advanced
uploadedFiles/ directives and end-of-life care. Information on how people are diagnosed with MBC could be
Content_Binaries/
806-03161.pdf improved, and there is a dearth of information on new drugs in clinical research.
MBC Alliance members recognize that there are a number of opportunities to use our
collective resources to extend the quality and reach of our information and patient support
services. A next step is to understand more clearly who is and who is not using the support
services and tools, how the services are being used, and how they can be improved to better
meet the needs of people living with MBC. Through a collaborative effort, we will work to offer
better support to address MBC patients’ unique needs and empower them to be informed
partners in their treatment decision making.

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