About Us
AdvancedBreastCancerCommunity.org represents the collective thinking of a partnership among 13 of the leading breast cancer patient advocacy organizations in the United States, The Advocate Partners, and Inspire. This website is dynamic and will change to reflect new research, treatment, and clinical trials information.
We are grateful to Bristol-Myers Squibb for their generous support in the initial development of this web portal.
The advocacy organizations include:
The partners have contributed their expertise, time and excellent online resources from their websites. These resources have been gathered into a clearinghouse or electronic library where users can easily find glossaries, newsletters, brochures, booklets, decision-making tools, and many other superb resources specifically targeted to the needs of those living with advanced breast cancer.
The Advocate Partners, a patient-centered health consulting firm, provides overall editorial and content management for the website. The site is owned by Inspire, a healthcare online community developer.
Why create a web portal?
In December 2006, Living Beyond Breast Cancer published its White Paper "Silent Voices" detailing the results of its online survey of people living with advanced breast cancer. The findings confirmed the need for a targeted approach to information and support for the advanced breast cancer patient. To paraphrase the report, existing resources are located within many different websites making it difficult for women to locate and access all of them. The report concluded, "There is no comprehensive website that serves as an information clearinghouse for the advanced breast cancer community."
The study found that this community tends to seek information online. They highly valued information about their diagnosis and were quite knowledgeable about it. They also sought information on physicians, treatments centers, health insurance, Medicare, Medicaid, and disability benefits. Almost three-quarters of the 700+ respondents sought information on a weekly or even daily basis. More than two-thirds found it helpful to learn about the experiences of other women living with advanced breast cancer. Most importantly, the report found that in most instances knowledge decreased anxiety about the disease.
In March 2007, Bristol-Myers Squibb convened a meeting of breast cancer advocacy groups interested in identifying the unmet needs of those living with advanced breast cancer. Not surprisingly, this group also found it difficult to efficiently navigate the numerous websites and easily locate all of the valuable information about clinical trials, treatments, and support services for the advanced breast cancer patient. At the request of the organizations represented at the meeting, Bristol-Myers Squibb commissioned a gap analysis of websites to determine the amount of information, as well as the ease in locating advanced breast cancer information on the site. The Advocate Partners conducted the analysis. Using the needs identified by the advocate leaders and those identified in the "Silent Voices" report, the Advocate Partners analyzed 55 cancer and breast cancer specific websites and found information about advanced breast cancer to typically be a very small part of the overall information on each of the breast cancer websites and frequently found the information difficult to access. On many sites, there was no consistent, systematic presentation focused on advanced breast cancer. The user was left to cherry pick information across a variety of sites.
The advocacy leaders concurred with the "Silent Voices" survey respondents that having a web portal solely dedicated to enabling the advanced breast cancer patient to more easily access the best and most up-to-date information about clinical trials, treatment options, support services, communication vehicles, and meetings is the most important first step to satisfy the unmet needs of this community.
AdvancedBreastCancerCommunity.org
In September 2007, Bristol-Myers Squibb funded the initial development of AdvancedBreastCancerCommunity.org. The breast cancer advocacy leadership steering committee approved the logos, site name, and content of the site. The Advocate Partners developed and edited content from a variety of reliable, unbiased sources, including the National Cancer Institute, the American Cancer Society, and the websites of the leading breast cancer organization partners. Inspire has provided the technical expertise, design, and online community development. The web portal and the online community are the result of an on-going team approach - advocates, content consultants, technical experts and funders.
AdvancedBreastCancerCommuity.org provides access to the information that advanced breast cancer patients are seeking and the unique opportunity to join an online community. This moderated community is available 24/7 and 365. It enables users to connect with others to share information about clinical trials, treatments, side effects, best practices, meetings, support services, insurance, employment issues, and everyday life and living.
While there are many things this web portal offers, this is just the beginning. There is still much more that it could be. We hope that you will share your ideas and suggestions with us. As we plan for future additions to the site your input will be invaluable. Please visit us often as we continue to update the site, you will be able to see some of your ideas brought to fruition.
