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Introduction

In 1996, the National Cancer Institute (NCI) and the Centers for Disease Control and Prevention (CDC) discussed with the National Academies’ National Research Council and Institute of Medicine (IOM) the advantages of creating a National Cancer Policy Board (the Board) administered by the IOM. In 1997, funded primarily by the NCI and CDC with some private sector contributions (for example, the American Cancer Society), the Board was established as a division of the IOM. The Board has 18 members with expertise and experience in cancer medicine, science, and advocacy drawn from the national cancer community. As an independent entity, the Board sets its own agenda which involves identifying emerging policy issues in the nation’s effort to combat cancer and preparing reports that address those issues.

Before the establishment of the Board, the IOM had begun a long history of exploring and reporting the subject of breast cancer, including: Breast Cancer: Setting Priorities for Effectiveness Research (Institute of Medicine and National Research Council, 1990), which recommended to the Health Care Financing Administration research directions on subjects like improved databases, variations in breast cancer care and outcomes, and general methodological issues like indices of severity and case-mix; and A Review of the Department of Defense’s Program for Breast Cancer Research (Institute of Medicine, 1997), which advised the U.S. Army Medical Research and Materiel Command on progress and future directions of its Breast Cancer Research Program.

The Board, after it was established, built on this experience by releasing under its aegis three additional reports: Mammography and Beyond: Developing Technologies for the Early Detection of Breast Cancer (Institute of Medicine and National Research Council, 2001), which reviewed technologies for breast cancer screening and diagnosis that were in various stages of development; Meeting Psychosocial Needs of Women with Breast Cancer (Institute of Medicine and National Research Council, 2004), which examined the current state and future needs of psychosocial research and care for women with breast



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Saving Woman’s Lives: Strategies for Improving Breast Cancer Detection and Diagnosis 1 Introduction In 1996, the National Cancer Institute (NCI) and the Centers for Disease Control and Prevention (CDC) discussed with the National Academies’ National Research Council and Institute of Medicine (IOM) the advantages of creating a National Cancer Policy Board (the Board) administered by the IOM. In 1997, funded primarily by the NCI and CDC with some private sector contributions (for example, the American Cancer Society), the Board was established as a division of the IOM. The Board has 18 members with expertise and experience in cancer medicine, science, and advocacy drawn from the national cancer community. As an independent entity, the Board sets its own agenda which involves identifying emerging policy issues in the nation’s effort to combat cancer and preparing reports that address those issues. Before the establishment of the Board, the IOM had begun a long history of exploring and reporting the subject of breast cancer, including: Breast Cancer: Setting Priorities for Effectiveness Research (Institute of Medicine and National Research Council, 1990), which recommended to the Health Care Financing Administration research directions on subjects like improved databases, variations in breast cancer care and outcomes, and general methodological issues like indices of severity and case-mix; and A Review of the Department of Defense’s Program for Breast Cancer Research (Institute of Medicine, 1997), which advised the U.S. Army Medical Research and Materiel Command on progress and future directions of its Breast Cancer Research Program. The Board, after it was established, built on this experience by releasing under its aegis three additional reports: Mammography and Beyond: Developing Technologies for the Early Detection of Breast Cancer (Institute of Medicine and National Research Council, 2001), which reviewed technologies for breast cancer screening and diagnosis that were in various stages of development; Meeting Psychosocial Needs of Women with Breast Cancer (Institute of Medicine and National Research Council, 2004), which examined the current state and future needs of psychosocial research and care for women with breast

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Saving Woman’s Lives: Strategies for Improving Breast Cancer Detection and Diagnosis cancer; and Saving Women’s Lives: Strategies for Improving Breast Cancer Detection and Diagnosis (Institute of Medicine and National Research Council, 2005), which reviewed issues in breast cancer screening and the development and deploying of new approaches to early detection of breast cancer. The symposium reported here seeks to describe and disseminate the content and recommendations of this last report. Furthermore, this sequence has not yet come to an end. As this symposium was being held, another committee under the aegis of the Board, began work on Improving Mammography Quality Standards, a study of selected issues important to the federal Mammography Quality Standards Act that was requested by the U.S. Congress to inform the planned reauthorization of the Act in 2005. Over the years, five federal agencies have taken the lead in sponsoring the breast cancer work of the IOM and the Board—the NCI, CDC, and Food and Drug Administration recently and earlier the Health Care Financing Administration and the Department of the Army. For the Mammography and Beyond and Saving Women’s Lives projects, a group of foundations, prominently The Breast Cancer Research Foundation (BCRF), the Broad Reach Foundation, and the Apex Foundation,1 took the lead, accompanied by a number of other private donors, the Carl J.Herzog Foundation, the Josiah Macy, Jr., Foundation, the Jewish Healthcare Foundation, the Kansas Health Foundation, Mr. Corbin Gwaltney, Mr. John Castle, and the New York Community Trust. Since 1993, The Breast Cancer Research Foundation has been raising funds, now amounting to about $ 100 million, to support innovative research in preventing and curing breast cancer. The BCRF was a major supporter of the report, Saving Women’s Lives: Strategies for Improving Breast Cancer Detection and Diagnosis and also was prepared to contribute to the costs of planning and disseminating the information and urging the actions described in that report. The BCRF and the Board decided that getting out the message of the report could best be accomplished by a symposium assembling and hearing from those who knew most about breast cancer screening and early detection. They were asked to share insights and consider ways in which the objectives of the report could be achieved from the standpoint of what women need to know, the best models of screening programs, manpower, risk stratification, basic research, and payment. These contributions could then be documented and distributed widely and could continue to draw attention to and expand the reach of the report and the salience of breast cancer screening and early detection and the development and deployment of new screening technologies. 1   The Apex Foundation support was given in memory of Mabel Frost McCaw and Joan Morgan, and in honor of Sallie Nichols, Beth Weibling, Jane Carson Williams, Bonnie Main, and Amy McGraw.

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Saving Woman’s Lives: Strategies for Improving Breast Cancer Detection and Diagnosis The one day symposium reported here was designed by a planning group that relied on the experience and wisdom of the staff of the Breast Cancer Screening Consortium at NCI, the American Cancer Society’s Cancer Screening staff, the CDC, the medical leadership of The Breast Cancer Research Foundation, and members of the Board. The morning of the symposium featured an overview plenary session introduced by Evelyn Lauder, Founder and Chairman of The BCRF; and Dr. Edward Penhoet, Chairman of the Committee, with presentations from senior experts in cancer research and care, breast cancer screening and epidemiology, radiology and breast imaging, basic cancer research, and national payment policy. The afternoon consisted of invited panel and group discussions on two major topics important to breast cancer detection, delivery of screening services and technology development and deployment. A brief wrap-up session at the end of the day allowed two rapporteurs of the group discussions to summarize the information and recommendations presented during those sessions. They were followed by a final commentary from a representative of cancer survivors. The agenda identifying the morning speakers, their titles, affiliations, and topics, and the afternoon panelists with their titles and affiliations, can be found in the appendix. The speakers in each group discussion were assembled from different governmental, academic, and private sector organizations to provide a wide range of perspectives. The participants in discussions, questions, and answers during the morning and afternoon are also reported. Following this Introduction, Chapter 2 opens with introductions from Mrs. Lauder and Dr. Penhoet and presents the remarks of the morning plenary speakers in order of appearance along with the question and answer sessions, Chapter 3 presents the speakers and discussions from the afternoon, and Chapter 4 concludes the symposium with summing up from the rapporteurs and a survivor representative and some further discussion. All the presentations and discussions were edited for easier reading and to add graphic material in the form of figures numbered sequentially from PowerPoints used during each speaker’s presentation. This dissemination report contains only what was said and displayed at the symposium. It is, therefore, a less formal forum than a Board or IOM report. Much interesting information and analysis and provocative ideas and suggestions can emerge during such an event from the experts, officials, and opinion leaders assembled. The Board and The Breast Cancer Research Foundation hope that this record of the day will provide continuing food for thought and ideas for actions in support of breast cancer detection and diagnosis and saving women’s lives. Roger Herdman and Larry Norton