Bridging the Research Data Divide: Rethinking long-term value and access for historical and contemporary maternal, infant, and child research
The Center for the History of Medicine is pleased to announce that it has been awarded $367,602 in grant funding from the Council on Library and Information Resources (CLIR) for its proposal Bridging the Research Data Divide: Rethinking long-term value and access for historical and contemporary maternal, infant, and child research. Grant funding will enable the Center to collaborate with the University of Alberta Libraries (UAL) to create rich metadata for discovery, access, citation, and long-term preservation of maternal, infant, child, and youth health (MCH) research data. The Cataloging Hidden Special Collections and Archives program is funded by The Andrew W. Mellon Foundation and administered by CLIR.
The project aims to help close a significant gap in current instructional and operational approaches to the long-term preservation of research data. Such approaches generally stop at the deposit of research data into a repository for short term retention. This type of approach does not take into consideration: 1) the long-term historical value of research data; 2) interdisciplinary research; 3) how to describe research data for discoverability; 4) the need to identify and describe contextualizing manuscript collections that support the interpretation and reuse of data; 5) the need to describe data and records in advance of transferring the data to institutional repositories and special collections environments; and 6) how to make researchers aware of the existence of research data useful to their arenas of inquiry, even when collections contain protected information, such as HIPAA identifiers.
To build improved practices, the Center will process and expose Harvard School of Public Health and Harvard Medical School faculty research data and related records for the Boston site of the Longitudinal Studies of Child Health and Development (1930-1987, Jane Gardner, Harold C. Stuart, and Isabelle Valadian, principal investigators) that led to the growth charts used by pediatricians today; early intervention studies deriving from the multisite Infant Health and Development Program led by Marie McCormick between 1985 and 2014; and the Social Transition and Risk for Disordered Eating in Fiji study conducted by Anne E. Becker (2004-2010), which identified the impact of social media exposure on health and body image.
UAL will focus on 36 studies drawn from pediatric clinical trials (two active: Ketorolac and Metoclopramide, 2012-2014; Probiotic/Lacidofil, 2013-2017) and maternal and infant cohort studies conducted by UA-affiliated or supported Maternal Infant Child and Youth Research Network (MICYRN) researchers. MICYRN, a federal nonprofit society, links 19 academic health centers in Canada and over 20 affiliated practice-based research networks.
In all, the Center and UAL will describe 39 studies comprised of 390 electronic files and 135 cubic feet of analog records. Kathryn Hammond Baker, Deputy Director of the Center, Sharon Farnel, Metadata & Cataloguing Librarian, UAL, and Kendall Roark, Data Curation Consultant, UAL, will serve as the project’s principal investigators. Emily R. Novak Gustainis, the Center’s Head of Collections Services, will serve as managing archivist.
This is the Center’s third Cataloging Hidden Special Collections and Archives grant award, and one of only nineteen projects funded by CLIR as part of the program’s final round of awards. Previous initiatives include Foundations of Public Health Policy (2008) and Private Practices, Public Health: Privacy-Aware Processing to Maximize Access to Health Collections (2012).
Access to Activism: Records of Physicians of Social Conscience
The Center for the History of Medicine is please to announce that funding for its Access to Activism: Records of Physicians of Social Conscience at the Center for the History of Medicine was awarded in May 2014 by the Harvard University Library.
The initiative will open to researchers three collections that demonstrate the global reach of Harvard faculty and the impact of organizing for social change. These collections include the 1) records of the International Physicians for the Prevention of Nuclear War, co-founded in 1980 by Bernard Lown (1921-), Professor of Cardiology, Emeritus, Harvard School of Public Health and an organizational recipient of the 1985 Nobel Peace Prize (1930s-1987, H MS c432, 72 cubic feet), 2) the papers of Sanford Gifford (1918-2013), Associate Clinical Professor of Psychiatry at Harvard Medical School, early member of Physicians for Social Responsibility, and organizer of Medical Aid to Indochina (1956-1986, H MS c328, 14.5 cubic feet), and 3) the papers of Jonathan R. Beckwith (1935-), Professor of Microbiology, Emeritus, Harvard Medical School, who, while best known for isolating the first gene from a human chromosome, was an early member of (along with Harvard faculty members Richard Lewontin and Stephen Jay Gould), and former president of the board for, Science for the People (see: http://hms.harvard.edu/news/science-people-2-13-14) (1969-2009, H MS c370, 43 cubic feet).
Together, these collections demonstrate the unique contributions of American physicians to social action and, as Ellen L. Bassuk states in her introduction to The Doctor-Activist, Physicians Fighting for Social Change (1996), they illustrate the inventive, courageous, high-energy, and resourceful nature of three individuals who redefined the limits of patient care.
Recent Blog Posts
- Staff Finds: Jonathan Beckwith’s Social Activism Records
- Staff Finds: IPPNW Collection of Audio and Audiovisual Recordings Related to Nuclear War and the Nuclear Arms Race
- Staff Finds: IPPNW Anti-War Efforts Recognized by World Leaders
- Center Staff Helps Celebrate Opening of the Medact Records