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MBC Patient Information and Support Services

Alliance members, and others, need to improve consistency of information about MBC across
agencies; better quantify the numbers of people living with MBC they are serving; understand
what services are most often accessed; and expand reach into all communities regardless of
socioeconomic status, gender, race, culture or geography. Information and
support are not
distinct from one
• Quantitative data on the demographics and numbers of MBC patients accessing another. MBC patients
programs and services are not consistently collected. As a result, it is not known how find information to be
patients use the tools, how the programs and services can be optimized, and which supportive and seek
patients are not being reached. information from their
support systems;
• The majority of organizations report that their programs and services are underutilized, thus, services for MBC
surmising that patients don’t know about them, do not consider the programs to be patients should refer
suited to their needs, or are seeking information and support in other places. to both.

• Many Alliance members provide high-quality information and support services to MBC
patients and their families. However, the information provided requires that patients
have relatively high health literacy and be Internet savvy. Organizations must consider
how to reach other subgroups of the MBC patient population. Because Alliance
members offer so much general information, it is difficult for individual patients to find
what they need. Nearly half of MBC
patients surveyed
• Persistent gaps in MBC information on members’ sites and in print include detailed say they find the
information on the latest treatments; monitoring of treatment, including for side effects information they
need difficult to
and quality of life; palliation; and advanced directives and end-of-life care. Information locate and confusing,
on how MBC is diagnosed could be improved, and there is a dearth of information on and that what they
new drugs in clinical research. do find doesn’t fully
address their needs.
• Alliance member websites do not address MBC facts sufficiently to inform the MBC
patient populations or even caregivers and early stage breast cancer patients. More
content and community can be created by enhancing current information, using a
modern design, and adding tools for social networking.

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