National Action Plan on Breast Cancer

Background

The National Action Plan on Breast Cancer (NAPBC) is a unique public/private partnership that serves as a catalyst for national efforts to coordinate actions by government and nongovernment organizations, agencies, and individuals to advance breast cancer knowledge, research, policy, and services. The NAPBC was initiated in response to the National Breast Cancer Coalition’s 2.6 million-signature petition calling for a coordinated national strategy to combat breast cancer, the second leading cause of cancer deaths among American women. By encouraging new ideas and mobilizing partnerships, the NAPBC strives to "jump-start" innovative, long-term efforts that will result in rapid progress in the fight against breast cancer. The work of the NAPBC is guided by a Steering Committee and five Working Groups. Implementation of the NAPBC is coordinated by the U.S. Public Health Service’s Office on Women’s Health (PHS OWH) within the Department of Health and Human Services.

A Third Year of Achievement

For the NAPBC, 1998 was a year of fruition. As a mature public/private partnership, the NAPBC completed major projects to advance breast cancer research, guide policy, and educate consumers and health care providers on urgent topics related to breast cancer. The Working Groups prepared and disseminated significant findings and recommendations from 1997 workshops through publications and the NAPBC Web site. In addition, they produced and disseminated health education products, compiled and analyzed survey results, completed reports and papers on a wide range of breast cancer-related topics, and expanded the role of the NAPBC Web site as a notable resource for information on breast cancer. While one of the original six Working Groups has met its objectives and fulfilled its charge, the others, having identified new areas to be addressed, have begun challenging new activities and are planning workshops in groundbreaking areas of research.

The Steering Committee continued to guide the efforts of the Working Groups, refine the infrastructure of the Plan, and gain the support and collaboration of new public and private partners. In addition to reviewing Working Group budgets and activities, the Committee addressed membership issues in a continuing effort to enhance the diversity and expertise of the group. Looking to the future, the Committee decided to convene a 1999 Breast Cancer Day of Dialogue, a forum that will bring together Working Group members and other participants to discuss progress and future directions in the fight against breast cancer. Although many important operating policies and decisions were made during the year, they are not the focus of this report. This report provides an overview of the NAPBC Working Groups’ accomplishments in their third year to further national efforts to eradicate breast cancer.

The Hereditary Susceptibility Working Group

This Working Group is implementing a comprehensive plan to address the needs of individuals carrying breast cancer susceptibility genes and to advance education among consumers, health care professionals, and at-risk patient groups. During the past year, the Working Group examined a broad range of critical issues related to genetic susceptibility to breast cancer. In 1998, the Working Group:

• Finalized the curriculum outline, Hereditary Susceptibility to Breast and Ovarian Cancer: An Outline of Fundamental Knowledge Needed by All Health Care Professionals, and disseminated it to health care professionals. The curriculum outline is an educational tool targeted at health care professional groups to enable them to provide high quality, customized education and training for their members on the implications of testing for genetic susceptibility to breast and ovarian cancer. The document was distributed at the National Coalition of Health Professional Education in Genetics conference, and it has been disseminated to numerous nursing and medical schools. It is also available on the NAPBC Web site (http://www.napbc.org).
  
  
• Designed the Hereditary Susceptibility Materials Database, a searchable database that will be placed on the NAPBC Web site. The database contains several hundred materials developed by cancer agencies and organizations, as well as educational institutions, that are available to consumers and health care professionals.
  
  
• Disseminated the Working Group’s policy recommendations on health insurance and workplace discrimination to consumers, scientists, and policy makers at the State and Federal levels. These recommendations served as the foundation for the Clinton Administration’s position described in the report, "Genetic Information and the Workplace." This report and an Administration initiative to prohibit employment discrimination on the basis of genetic tests/information were announced by Vice President Gore in January 1998.

• Prepared a summary of the findings from the Workshop on Privacy and Confidentiality in Genetics Research, convened by the Working Group in September 1997. The workshop was cosponsored by the National Human Genome Research Institute. At the workshop, over 100 researchers, legal and insurance experts, and consumer advocates assessed protection mechanisms for confidentiality in genetics research, addressed key privacy and confidentiality issues, and developed a set of policy recommendations. The summary includes strategies to protect against third party access to experimental research data and a recommendation that genetic information should receive the same privacy protection as other individually identifiable health information.

• Initiated planning for a workshop, Bragdon v. Abbott: Implications for Asymptomatic Genetic Conditions, which will be held February 19, 1999. Using breast cancer as a case study, the workshop will explore the implications of a Supreme Court decision involving legal protection of an individual with asymptomatic HIV under the Americans with Disabilities Act.

• Continued dissemination of the video "Genetic Testing for Breast Cancer Risk: It’s Your Choice" to medical practitioners, cancer centers, and breast cancer organizations. The video was designed to assist consumers in making informed choices about genetic testing. In addition, a display unit for the video was developed and exhibited at several conferences and workshops.

The Clinical Trials Accessibility Working Group

This Working Group is investigating methods to make clinical trials more widely accessible to women with breast cancer and women at risk for breast cancer. It is identifying barriers to participation in clinical trials, including barriers associated with the informed consent process, patients’ and physicians’ misperceptions about clinical trials, and costs of participation. In 1998, the Working Group:

• Completed a total of 17 consumer, physician, and patient focus groups on participation in clinical trials and prepared a draft report on the results. The final report, Developing a Marketing Communication Campaign To Increase Enrollment in Clinical Trials, will serve as the basis of a marketing campaign that partner organizations will implement to increase consumer participation in clinical trials.
  
  
• Completed drafts of two publishable papers on barriers to and facilitators of consumer participation in clinical trials. The papers will be submitted for publication to a professional journal in the spring of 1999.

The Etiology Working Group

This Working Group is focusing efforts on expanding the scope of biomedical, epidemiological, and behavioral research activities related to the etiology of breast cancer, particularly in the areas of chemicals and hormones, lifestyle factors, ionizing and non-ionizing radiation, viruses, and gene/environment interactions. In 1998, the Working Group:

• Prepared and disseminated findings and recommendations from workshops, as follows:
  
  • Published a summary of the Workshop on Physical Activity and Breast Cancer and the papers resulting from the workshop in a supplement to the journal, Cancer (Supplement, 83:3, August 1,1998). The papers examine the epidemiologic evidence for an association between physical activity and the risk of breast cancer and review the methods used to assess this correlation. In addition, they present recommendations for improving these methods and for future areas of investigation. The full workshop summary also is available on the NAPBC Web site, as well as a conferencing forum for continuing communication among workshop participants.

• Prepared a summary and a final report from an advocacy perspective on the Workshop on Electromagnetic Fields, Light-At-Night, and Human Breast Cancer. The final report presents objectives for educating the public on this topic, taking prudent avoidance measures, and advancing research in this area. These documents are available on the NAPBC Web site.
  

• Prepared a summary of presentations and the advocates’ conclusions and recommendations from the Workshop on Medical Ionizing Radiation and Human Breast Cancer. The documents provide information on what is known and suspected about the effects of medical ionizing radiation. They also present recommendations for future research, education, and policy in this area. These documents can be viewed on the NAPBC Web site.
  

• Disseminated letters to several nonprofit cancer organizations regarding recommendations from the Workshop on Viruses and Human Breast Cancer. The workshop recommendations address several areas to help advance the study of the possible role of viruses in the development of human breast cancer. Similar letters previously were disseminated to major government funding agencies.

• Initiated planning for three workshops to be convened in 1999 that will address important issues in breast cancer etiology:

• The Workshop on Early Life Exposures and Risk of Breast Cancer, which will be convened January 20 and 21, will bring together consumers, cancer epidemiologists, and those with expertise in maternal and child health and prenatal carcinogenesis to provide a forum for discussion on the current state of knowledge concerning perinatal exposures and breast cancer. In addition, the workshop will focus on areas that presently are being studied, possible mechanisms, and the direction of future research.

• The Workshop on Multicultural Aspects of Breast Cancer Etiology, which will be convened March 17 through March 20, will bring together individuals from varied disciplines, including members of the breast cancer research and minority health advocacy communities, to examine the current state of knowledge concerning multicultural aspects of breast cancer etiology, explore the limitations of and gaps in current research and activities, and identify and prioritize future research directions. The Working Group is preparing a literature review and a report on current research activity in preparation for the workshop.

• A workshop on the role of tissue architecture in the development of breast cancer is scheduled for September 1999. The workshop will bring together consumers and researchers to examine current information and hypotheses related to this topic and to identify areas for future research.

• Completed the Breast Cancer Comprehensive Questionnaire on breast cancer risk factors, including short and long core questionnaires, six modules, and an interviewers’ manual. The questionnaire is designed to provide researchers with a standardized set of questions on environmental factors linked to breast cancer. The questionnaire modules capture information on sociodemographic and cultural factors, medical and reproductive history, food and nutrition, environmental exposures, occupational history, and personal and lifestyle choices. In addition, a series of illustrative show cards were developed for use in administering the questionnaire.

• Completed and placed on the NAPBC Web site the State and Federal Resources for Breast Cancer Incidence and Mortality Data. This list of resources provides information on individuals and public and private agencies that are involved in examining geographical areas in which there are elevated breast cancer rates.

The Information Action Council

The goal of this Working Group is to improve access to information about breast cancer for consumers, scientists, and practitioners via the Internet and other information technology. In 1998, the Working Group:

• Completed research for and began developing a new product, Local Breast Cancer Information Resources: A Web-Building Toolkit, which will be available on the NAPBC Web site. The toolkit will include step-by-step information, templates, resources, and referrals for developing a Web site. By facilitating the formation of local Web sites, the Working Group anticipates filling a need for easy, low-cost access to current breast cancer information and resources. A template for the toolkit is under development and will be tested by four community groups.

• Developed a comprehensive plan to conduct a multisite evaluation of the Bridging the Gap (BTG) pilot project. The evaluation will assess the process and outcomes of the project, which seeks to reach underserved women with breast cancer information via the Internet and to facilitate the access of these women to breast health care. It also will delineate model program components that can be duplicated in community groups across the nation. The four BTG programs are located in Anchorage, Alaska; Boston, Massachusetts; Bowling Green, Kentucky; and Little Rock, Arkansas.

• Responded to public inquiries through the NAPBC Web site. Responding to inquiries about breast cancer remains an active part of the Working Group’s mission. Those who submit questions on the NAPBC Web site include breast cancer survivors, families or friends of people with breast cancer, students, researchers, and organizations with Web sites related to breast cancer information and issues.

• Researched and prepared an extensive list of Web sites with local breast cancer resources across the nation. This list includes 72 Web sites dedicated specifically to breast cancer, 43 breast cancer pages that are part of sites dedicated to topics other than breast cancer, and 19 mentions of breast cancer programs in lists of health programs. The extensive search indicated that 12 states have no local breast cancer information on the Web.

• Continued maintenance and promotion of the NAPBC Web site.

The Consumer Involvement Working Group

This Working Group has defined several specific activities to help ensure consumer involvement at all levels in the development of national research, education, and service delivery programs related to breast cancer. The Working Group seeks to increase and institutionalize consumer participation in ongoing research, as well as in the review of research for funding, and to involve consumers in the design of service delivery and education programs. In 1998, the Working Group:

• Finalized a preliminary report on the results of the Consumer Involvement Cancer Center Survey and the Consumer Involvement Survey. The surveys explored the nature and extent of involvement of breast cancer consumers (patients and survivors, their representatives, or those at risk) as advocates in research, service delivery, public policy, and education and outreach.

• Began a secondary analysis of data from the Consumer Involvement Cancer Center Survey and the Consumer Involvement Survey. The results from this analysis will be used to expand on earlier findings and will serve as the basis for recommenda-tions regarding consumer involvement in activities related to breast cancer.

• Finalized the Industry Consumer Involvement Survey, which will be sent to pharmaceutical and biotechnology companies across the country. The survey will gather information on how these companies involve consumers in various aspects of the research process, including the development of research protocols/design, clinical trials issues, institutional review boards, and funding decisions.

The National Biological Resource Banks Working Group

This Working Group focused on establishing a national network of tissue banks to ensure a resource of well-characterized and well-documented biological materials for multiple areas of breast cancer research. Having completed its objectives and fulfilled its charge, the Working Group has sunset. It is the first NAPBC Working Group to do so. In 1998, the Working Group:

• Convened a Working Group meeting to prepare the final report on the group’s activities. The Sunset Report, which was presented to the NAPBC Steering Committee, details the accomplishments of the Working Group.

• Prepared a paper in lay language that outlines the activities and accomplishments of the Working Group. This paper will be submitted to consumer/advocacy newsletters for publication.

• Prepared and printed fact sheets describing each of the Working Group’s major activities. The fact sheets provide detailed information on the breast cancer specimen and data information system, guidelines for the ethical use of biological tissues, the biological materials needs assessment survey, and the national biological resource banks network.

• Posted on the NAPBC Web site Working Group products and information on resources. These items include the Executive Summary of the Model Consent Form for Biological Tissue Banking Focus Group and links to other Web sites for information on biological resource banks for breast cancer research.

Highlights of Upcoming Activities

• Substantial progress was made in implementing NAPBC activities in 1998. Highlights of some of the upcoming NAPBC activities for 1999 include:

• The Consumer Involvement Working Group will develop and implement a Government Consumer Involvement Survey, which will assess the level of consumer involvement in relevant government agencies.

• The Industry Consumer Involvement Survey will be disseminated to pharmaceutical and biotechnology companies across the country.

• The secondary data analysis for the Consumer Involvement Survey and the Cancer Center Consumer Involvement Survey will be completed, and a report will be prepared on the results.