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National Cancer Institute

Cancer Survivor Panel Discussion

Virgil Simmons
Founder and President, The Prostate Net
Secaucus, NJ

  • Significant unmet needs for education and empowerment concerning cancer information exist, especially in minority communities. The Internet represents an important resource to connect people quickly with information that can save or improve the quality of their lives.
  • Theprostatenet.com Web site seeks to connect African-American males with information on prostate cancer including screening and available resources, through use of its Web site, printed materials, and peer counseling programs featuring prostate cancer survivors. In another effort to reach this population, The Prostate Net has recruited and trained barbers as "lay health motivators" to promote awareness of prostate cancer risk and screening and to connect people to their local medical communities. Similar approaches, such as involving women in churches, are in use to promote awareness of health risks of particular interest to the African-American community, such as high blood pressure, diabetes, stroke, and breast and lung cancers.
  • The "In the Know Newsletter" was created to provide further information about health conditions of interest to African Americans. "In the Know" awards are given for excellence in addressing health disparities. Podcasts and "cellcasts" are other methods being explored to bring health information to this community.
  • The "Wired Barbershop" program places computers with Web access in barbershops to enhance access to and delivery of knowledge. Educational videos concerning prostate cancer also have been provided to barbershops, along with printed information to share with doctors or family members.

Susan Lowell Butler
Executive Director
D.C. Cancer Consortium
Washington, DC

  • Concerns of a cancer survivor (Ms. Butler is an 11-year survivor of breast and ovarian cancers):
    • Health insurers are developing online tools for consumer use, but concerns exist related to whether the information gathered from these tools will be used to the benefit or detriment of consumers, particularly cancer survivors.
    • Many patients have difficulties accessing their own medical information. Reliable and easy-to-use tools are needed to allow patients to manage their medical records. Related to this, tools are needed to allow easy and seamless access to patients' medical records by all of their health care providers. These tools need to go beyond the Passport program and provide information to all patient caretakers
    • Disparities in access are significant; in particular, the elderly, sick, and poor suffer from a lack of access to information and resources.
  • Concerns of a patient advocate:
    • Online resources are important and may help decrease disparities by effectively disseminating information about beneficial health care tools and resources. Developers of these tools should work with advocates to ensure that the tools are effective and to develop relationships with online communities, which will influence policy and the distribution of research dollars.
    • Inexpensive access to health care journals also is highly desirable, as are simple, easy-to-use consumer healthdcare Web sites.
  • Concerns of a health care executive:
    • As the Director of the Washington, DC Cancer Consortium, Ms. Butler created a Web site to serve the complex DC community of patients, caregivers, and researchers. The Consortium encompasses 52 different groups, including four cancer centers and hospitals as well as neighborhood health organizations, all of which are working to implement the DC Comprehensive Cancer Plan. These activities have underscored the need for greater community access to the Internet, perhaps by making computers available to all public school students and in public sites (retail stores).

Gilles Frydman
Founder and President, Association of Cancer Online Resources
New York, NY

  • The Association of Cancer Online Resources (ACOR) was created to help cancer patients find care specialists and online communities of patients diagnosed with the same cancer. This resource is especially useful and important for people diagnosed with rare cancers who may have trouble finding specialists, or fellow patients, in their communities. ACOR also can provide support and resources for patients who are just finishing treatment.
  • The Passport for Care promises to be a useful resource, but more input from patients and caregivers is needed during its development. Patients will be able to provide suggestions for presenting information in a way that is useful and understandable to the patients themselves. The power of online patient communities should not be underestimated—for example, the success of Gleevac can be attributed in part to the efforts of ACOR in quickly recruiting trial participants.

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