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MC 741

Dickersin, Kay. Papers of Kay Dickersin, 1976-2004: A Finding Aid

Arthur and Elizabeth Schlesinger Library on the History of Women in America, Radcliffe Institute for Advanced Study, Harvard University

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Radcliffe Institute for Advanced Study, Harvard University

© President and Fellows of Harvard College

Descriptive Summary

Location: Collection stored off site: researchers must request access 36 hours before use.
Call No.: MC 741
Repository: Arthur and Elizabeth Schlesinger Library on the History of Women in America, Radcliffe Institute for Advanced Study, Harvard University
Creator: Kay Dickersin
Title: Papers of Kay Dickersin, 1976-2004
Date(s): 1976-2004
Quantity: 15.22 linear feet (36 file boxes, 1 half file box) plus 1 folio+ folder, 1 oversize folder, electronic records)
Language of materials: Materials in English.
Abstract: Papers of Kay Dickersin, professor of epidemiology, advocate for breast cancer survivors and increased funding for breast cancer research; also includes the papers of fellow activists Patricia Barr, Annette Drummond, and Mary Jo Kahn.

Immediate Source of Acquisition:

Accession numbers: 2005-M119, 2006-M25, 2012-M96
The papers of Kay Dickersin were given to the Schlesinger Library by Kay Dickersin between 2005 and 2012.

Processing Information:

Processed: June 2013
By: Laura Peimer with assistance from Samuel Bauer.

Access Restrictions:

Access. Unrestricted.

Conditions Governing Use:

Copyright. Copyright in the papers created by Kay Dickersin is held by the President and Fellows of Harvard College for the Schlesinger Library. Copyright in other papers in the collection may be held by their authors, or the authors' heirs or assigns.
Copying. Papers may be copied in accordance with the library's usual procedures.

Preferred Citation:

Kay Dickersin Papers, 1976-2004; item description, dates. MC 741, folder #. Schlesinger Library, Radcliffe Institute, Harvard University, Cambridge, Mass.

SEPARATION RECORD

Donor: Kay Dickersin
Accession numbers: 2005-M119, 2006-M25, 2012-M96
Processed by: Laura Peimer
The following newsletters have been transferred to the Schlesinger Library books and printed materials collection (pending review by curator):

BIOGRAPHY

Professor of epidemiology and advocate for breast cancer survivors, Kay Dickersin attended the University of California, Berkeley (BA in Zoology, 1974; MA in Cell Biology, 1975) and The Johns Hopkins University School of Public Health (PhD, 1989). She has served on the faculty at the University of Maryland School of Medicine in the Departments of Ophthalmology and Epidemiology and Preventive Medicine in various capacities (1989-1998) and on the faculty at Brown University (1998-2005). She has lectured at the Johns Hopkins University Bloomberg School of Public Health since 1991, and since 2005, she has been Professor of Epidemiology and the Director of the Center for Clinical Trials where she is involved in methodologic research, overseeing coordination of data collection and analysis of clinical trials, and systematic reviews. The latter especially pertains to her work as Director of the United States Cochrane Center, one of thirteen centers in the international Cochrane Collaboration, a post she has held since 1994. Dickersin's major research interests include randomized clinical trials, systematic reviews, reporting biases, evidence-based health care, and comparative effectiveness research. She has conducted studies in a number of important subject areas, including eyes and vision, surgery, and women's health.
Dickersin was diagnosed with breast cancer when she was 34 years old. A breast cancer survivor, she dedicated much of her career to breast cancer research advocacy. Dickersin and fellow advocate and nurse, Marsha Oakley, cofounded Arm-in-Arm, a Baltimore-based breast cancer support group and the support arm of the Maryland Women's Health Coalition, in 1984.
The National Breast Cancer Coalition (NBCC) was born as the Breast Cancer Coalition in May 1991, when organizations that belonged to the National Alliance of Breast Cancer Organizations (NABCO), and others met in Washington, D.C. to form a political action group centered on issues of breast cancer. At this meeting, Susan Hester (Mary Helen Mautner Project for Lesbians with Cancer), Susan Love (breast surgeon), Amy Langer (NABCO), and others presented the concept of the Coalition. Arm-in-Arm was an original member of the working board of NBCC. Through Arm-in-Arm, and because of her expertise as an epidemiologist specializing in clinical trials, Dickersin became a leader within NBCC.
Patricia Barr was born in 1951. Diagnosed with breast cancer in 1987, she died in 2003 from the disease. Barr was a leading activist for breast cancer research and advocacy. In addition to being a founding partner in the law firm Barr, Sternberg, Moss, Lawrence, Silver & Saltonstall, P.C., she was the president of the advocacy and support organization Breast Cancer Network of Southern Vermont. This organization originally formed as the Bennington chapter of the Breast Cancer Action Group of Vermont in 1992. The chapter became a separate organization in 1993, and in 2001, Breast Cancer Network changed its name to Vermont Cancer Network. Barr represented the Breast Cancer Network on the board of the NBCC and was also one of its founders and original directors. She played an active role in the organization's goal of obtaining increased government funding for breast cancer research. Through her positions in these organizations, she was a member of the National Cancer Institute's informed consent working group that established national standards for participants in cancer clinical trials and she served on the National Institutes of Health Secretary's advisory committee on genetic testing.
Annette Drummond was born in 1927. For most of her life, Drummond was a middle school science teacher in Baltimore, Maryland and taught at Woodbourne Junior High School in Baltimore (1957-1968), and later at both Cockeysville Junior High School and Ridgeley Middle School (1970-1981). She also taught in the computer literacy project at Catonsville Community College (1984-1985). Until her death of breast cancer in 2001, Drummond was an advocate for breast cancer patients. She served as the treasurer at Arm-in-Arm and was the grassroots coordinator for NBCC in Maryland.
Mary Jo Kahn was a founding member and the first president of the Virginia Breast Cancer Foundation, an advocacy and support organization. Kahn, who was diagnosed with breast cancer in 1989, started the Foundation with other activists who met in a breast cancer support group in 1991. The Foundation was involved with the working group that later became the board of directors of the NBCC. It was also the first chair of the grassroots taskforce for NBCC where its members played a central role in organizing NBCC's first campaign, in October 1991. Do the Write Thing was a letter writing campaign to Congress and President George H.W. Bush, asking for increased breast cancer research funding. This campaign collected signatures and letters from individuals in each state, the target number of signatures being the number of new cases of breast cancer diagnosed each year in that state.
Frances Visco served as the first elected President of NBCC, which has two organizational arms: NBCC, whose purpose is to lobby Congress and the states for improved public policies relating to the eradication of breast cancer and the National Breast Cancer Coalition Fund (NBCCF), which supports the educational efforts of NBCC.
After the success of NBCC's Do the Write Thing campaign, the organization launched a new campaign in 1993 to collect 2.6 million signatures representing women living with breast cancer in the United States.
In the early 1990s, Dickersin co-chaired the NBCC Research Task Force with Dr. Susan Love, a nationally known breast surgeon and author. Since they would be asking Congress to appropriate more money for breast cancer research, their first tasks were to estimate what was being spent at the time and how much more was needed. They hosted a series of hearings, at which breast cancer researchers were invited to submit abstracts telling them about the research they recommended and how much it would cost. The meeting led them to estimate that $300 million more would be needed for the coming year in research. The NBCC turned to the Department of Defense and the Army to be the prospective hosts for the $300 million more campaign. The Army, after consulting with the Institute of Medicine to obtain a roadmap, launched its breast cancer research program in 1993. Dickersin served on the Institute of Medicine panel to advise the Department of Defense. The Department of Defense then set up a two-stage peer review system. They named the second tier peer review the Breast Cancer Research Program Integration Panel. Dickersin served on the integration panel from 1993 to 1996.
NBCC initiated other significant programs during the 1990s. Starting in 1993, the NBCC hosted an annual spring conference in Washington, D.C., to educate breast cancer advocates about advocacy. This conference was also offered twice in Brussels, Belgium, for an international group of attendees. In 1994, the NBCC embarked on a signature campaign to enact the Department of Health and Human Services' Secretary's National Action Plan on Breast Cancer (NAPBC), in which Dickersin was involved. Project LEAD developed around 1994, when Dickersin suggested that the NBCC board members educate themselves about science so they could share responsibility with her for responding to science questions from Congress and others and the Board engaged in two day sof "teach-ins" about basic science and epidemiology/biostatistics. The Project LEAD course, launched by the Board so that its membership could benefit from a similar experience, served to train consumer advocates about science in general so that they could play a role in decision making. Dickersin developed a preliminary course syllabus and materials, and the draft course was presented to prospective faculty at a Train the Trainers event held in Columbia, Maryland, in 1995. The first LEAD course workshop was held in Los Angeles, July 1995.
In 1995, the biotechnology firm Genentech asked NBCC to help them recruit individuals for the first trial of Herceptin, a chemotherapy drug that is used for adjuvant and metastatic breast cancer treatment. NBCC asked that, in exchange for alerting consumers to the need for patients in the trial, consumers should be added to the trials' scientific committees. Frances Visco was appointed to the steering committee and Dickersin was appointed to the data monitoring committee. In 1996, the NBCC Fund held the first annual think tank on breast cancer called the Aspen Project in Aspen, Colorado. The meeting brought together a diverse group of visionaries, which included researchers, clinicians, journalists, philanthropists, industry representatives, social scientists and consumers. At this meeting, participants discussed issues relating to research, public policy, access to care, and barriers to eradicating the disease.

ARRANGEMENT

The collection is arranged in four series:

SCOPE AND CONTENT

The collection contains the professional papers of Kay Dickersin, Patricia Barr, Annette Drummond, and Mary Jo Kahn, advocates for the fight against breast cancer who were active on the board of the National Breast Cancer Coalition, as well as through other breast cancer advocacy organizations. The collection documents how these women and organizations worked within the public, political, and scientific arenas to impart the importance of and to increase funding for more research. Dickersin coordinated the donation and transfer of the collection, which was complemented by the Records of Bass and Howes, Inc., which are also housed at the Schlesinger Library. NBCC worked with the public policy consulting firm, Bass and Howes, on issues of grassroots organizing and lobbying and policy research, action, and development. The papers were in some order when received and have been further arranged by the archivist. Original folder titles have been maintained and any titles created by the archivist appear in brackets. Additional material received as electronic files will be reformatted at some future date for inclusion in this collection.
Series I, KAY DICKERSIN, 1976-2004 (#1.1-28.13, F+D.1, E.1), contains Dickersin's papers which reflect her work with NBCC, as well as Arm-in-Arm, a founding member organization of NBCC. Materials include board communications, fact sheets, press releases and position papers, testimonies, and correspondence; programs from NBCC advocacy conferences; letter-writing campaigns; letters to and from legislators in support of breast cancer research funding; course materials from Project LEAD, and research materials. This series is divided into two subseries: National Breast Cancer Coalition and Arm-in-Arm.
Subseries A, National Breast Cancer Coalition, 1986-2004 (#1.1-26.10, F+D.1, E.1), contains Dickersin's files documenting the work of NBCC and their various initiatives and projects. Included are meeting minutes and agendas, presentation slides and transparencies, reports, medical data and articles, printed materials produced by NBCC, conference packets, correspondence, notes, and lists. Of interest are agendas, meeting materials, participant lists, and final reports relating to NBCC's advocacy conferences; and packets distributed at the Aspen Project meetings containing overviews, reports, information on research grants, and lists of participants. Do the Write Thing campaign materials include general information about this national letter writing campaign as well as letters to legislators. Department of Defense integration panel files contain peer review rating procedures, correspondence, meeting minutes, and notes relating to organizational issues and how best to direct funding for breast cancer research. Included in the Department of Defense files is correspondence with Science Applications International Corporation (SAIC), since the integration panel served as a subcontractor to SAIC. Project LEAD materials include presentation materials, class handouts and program books, itineraries, rosters, and evaluations. Research materials in this subseries may have been used for general data gathering or for presentations and courses and include articles, notes, pamphlets, and other printed materials. This subseries is arranged alphabetically.
Subseries B. Arm-in-Arm, 1976-1997 (#26.11-28.13), includes correspondence, notes, lists, etc., regarding the activities and administration of Arm-in-Arm. Arm-in-Arm developed as a support group of the Maryland Women's Health Coalition (MWHC); correspondence and related material regarding its formation is included. Included as well are Mother's Day rally against breast cancer fact sheets, flyers, notes, steering committee materials, and an NBCC handbook regarding organizing Mother's Day events. This subseries is arranged alphabetically.
Series II. PATRICIA BARR, 1991-2002 (#28.14-33.26, OD.1), includes Barr's correspondence, notes, research materials, reports, printed materials, etc., relating to the work of the NBCC and activities of the Breast Cancer Network of Southern Vermont. Barr represented the Breast Cancer Network on the Board of the NBCC, of which she was also a founder and past director. This series is divided into two subseries: National Breast Cancer Coalition and Breast Cancer Network (Vermont Cancer Network).
Subseries A. National Breast Cancer Coalition, 1991-2002 (#28.14-32.2), includes files relating to Barr's work as a member of the NBCC board through Breast Cancer Network. Of note in this series are transparencies, slides and notes from Barr's presentations, many on advocacy and patients rights. These talks may have been given in her role as a director of the Breast Cancer Network or in her capacity as a member of NBCC. There is also correspondence relating to Barr's participation in the founding of the Breast Cancer Network and their early participation in NBCC (#29.11), and reports and research materials for recommendations for the National Institutes of Health's Secretary's Advisory Committee on Genetic Testing, a federal committee that advised the United States Secretary of Health and Human Services, and on which Barr served. This subseries is arranged alphabetically.
Subseries B. Breast Cancer Network (Vermont Cancer Network), 1993-2002 (#32.3-33.26, OD.1), includes correspondence, working documents, notes, lists, articles, and printed materials. Of note in this subseries are by-laws and articles of incorporation; financial and budget information; correspondence regarding fundraising initiatives and events; and notes and research materials regarding possible priorities for the organization, including projects for funding and responses to medical trends (#33.1-33.9, 33.21-33.24). This subseries is arranged alphabetically.
Series III. ANNETTE DRUMMOND, 1992-2000 (#33.27-34.1) includes correspondence, lists, a report regarding the Maryland Cancer Registry, and research materials. Drummond was the grassroots coordinator for NBCC in Maryland, as well as the treasurer of Arm-in-Arm. Her files include a letter to Drummond from Hillary Clinton expressing her personal commitment in the fight against cancer (#33.30). This series is arranged alphabetically.
Series IV. MARY JO KAHN, 1991-1997 (#34.2-37.9), contains Kahn's papers relating to her work for NBCC. Kahn was a founding member and the first president of the Virginia Breast Cancer Foundation. The Foundation was involved with the working group that later became the board of directors of the NBCC. They were also the first chairs of the grassroots taskforce for NBCC. In this role they played a central part in organizing the Do the Write Thing campaign. This series includes board communications, agendas, minutes, and notes; task force directives and updates; correspondence with legislators and memos regarding legislation; clippings and research materials. This series is arranged alphabetically.
A selection of digital photographs in this collection will be cataloged in VIA, Harvard University's Visual Information Access database. Others, referred to as "uncataloged" photographs, are not of sufficient research interest to warrant cataloging and are simply treated as part of the documents they accompany; they are marked on the back with an asterisk in square brackets [*].

Container List

Additional Index Terms

Breast--Cancer--Government policy--United States
Breast--Cancer--Research--United States
Bumper stickers
Cancer--Patients--United States
Electronic records
Informed consent (Medical law)--United States
Medical care--Law and legislation--United States
Patient advocacy--United States
Public interest lobbying--United States
Women--Health and hygiene--United States
Women health reformers--United States
Women's health services--United States
Arm-in-Arm (Organization)
Barr, Patricia
Bass, Marie
Breast Cancer Research Program (U.S.)
Drummond, Annette
Genentech, Inc.
Howes, Joanne
Institute of Medicine (U.S.)
Kahn, Mary Jo Ellis
Kushner, Rose
Love, Susan M.
National Action Plan on Breast Cancer (Organization : U.S.)
National Alliance of Breast Cancer Organizations
National Breast Cancer Coalition Fund (U.S.)
National Cancer Institute (U.S.)
Oakley, Marsha
United States. Army Medical Research and Development Command
Vermont Cancer Network
Virginia Breast Cancer Foundation
Visco, Frances

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