Improving Health Research
on Small Populations
PROCEEDINGS OF A WORKSHOP
Nancy Kirkendall and Jordyn White, Rapporteurs
Committee on National Statistics
Division of Behavioral and Social Sciences and Education
Board on Health Care Services
Health and Medicine Division
THE NATIONAL ACADEMIES PRESS
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by contracts between the National Academy of Sciences and the Robert Wood Johnson Foundation (Contract No. 10003839/Sponsor Award No. #75001) and the U.S. National Institutes of Health (Contract No. 10003551/Sponsor Award No. HHSN26300116). Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-47609-6
International Standard Book Number-10: 0-309-47609-7
Digital Object Identifier: https://doi.org/10.17226/25112
Additional copies of this publication are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu.
Copyright 2018 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
Suggested citation: National Academies of Sciences, Engineering, and Medicine. (2018). Improving Health Research on Small Populations: Proceedings of a Workshop. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/25112.
The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president.
The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. C. D. Mote, Jr., is president.
The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president.
The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine.
Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org.
Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task.
Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies.
For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo.
STEERING COMMITTEE FOR IMPROVING HEALTH RESEARCH ON SMALL POPULATIONS: A WORKSHOP
GRAHAM A. COLDITZ (Chair), Washington University School of Medicine
JAMES ALLEN, University of Minnesota Medical School
GRAHAM KALTON, Westat
JANICE C. PROBST, University of South Carolina, Arnold School of Public Health
LANCE A. WALLER, Emory University, Rollins School of Public Health
NANCY J. KIRKENDALL, Project Director
JORDYN WHITE, Senior Program Officer
ANTHONY S. MANN, Program Associate
COMMITTEE ON NATIONAL STATISTICS
ROBERT M. GROVES (Chair), Office of the Provost, Department of Mathematics and Statistics and Department of Sociology, Georgetown University
FRANCINE BLAU, School of Industrial and Labor Relations, Cornell University
MARY ELLEN BOCK, Department of Statistics (emerita), Purdue University
ANNE C. CASE, Woodrow Wilson School of Public and International Affairs, Princeton University
MICHAEL E. CHERNEW, Department of Health Care Policy, Harvard Medical School
JANET CURRIE, Woodrow Wilson School of Public and International Affairs, Princeton University
DONALD A. DILLMAN, Social and Economic Sciences Research Center, Washington State University
CONSTANTINE GATSONIS, Center for Statistical Sciences, Brown University
JAMES S. HOUSE, Survey Research Center, Institute for Social Research, University of Michigan
THOMAS L. MESENBOURG, U.S. Census Bureau (retired)
SARAH M. NUSSER, Office of the Vice President for Research and Department of Statistics, Iowa State University
COLM O’MUIRCHEARTAIGH, Harris School of Public Policy Studies, University of Chicago
JEROME P. REITER, Department of Statistical Science, Duke University
ROBERTO RIGOBON, Sloan School of Management, Massachusetts Institute of Technology
JUDITH A. SELTZER, Department of Sociology, University of California, Los Angeles
EDWARD H. SHORTLIFFE, Department of Biomedical Informatics, Columbia University and Arizona State University
BRIAN HARRIS-KOJETIN, Director
CONSTANCE F. CITRO, Senior Scholar
BOARD ON HEALTH CARE SERVICES
DAVID BLUMENTHAL (Chair), The Commonwealth Fund
PETER BACH, Center for Health Policy and Outcomes, Memorial Sloan Kettering Cancer Center
NIRANJAN BOSE, Gates Foundation, bgC3
OTIS BRAWLEY, American Cancer Society
MELINDA J. BEEUWKES BUNTIN, Department of Health Policy, Vanderbilt University School of Medicine
NEIL S. CALMAN, The Institute for Family Health; Family Medicine and Community Health, Icahn School of Medicine at Mount Sinai
CAROLYN CLANCY, U.S. Veterans Health Administration
PATRICIA M. DAVIDSON, Department of Acute and Chronic Care, School of Nursing, Johns Hopkins University
JANE DELGADO, National Alliance for Hispanic Health
JENNIFER E. DEVOE, Department of Family Medicine, Oregon Health & Science University
R. ADAMS DUDLEY, University of California, San Francisco, Center for Healthcare Value, Philip R. Lee Institute for Health Policy Studies, Medicine and Health Policy, University of California, San Francisco
RICHARD G. FRANK, Department of Health Care Policy, Harvard Medical School
TERRY FULMER, The John A. Hartford Foundation
CINDY GILLESPIE, Arkansas Department of Human Services
NADINE KASLOW, Department of Psychiatry and Behavioral Science, Emory University School of Medicine; Grady Memorial Hospital
CHRISTOPHER KOLLER, Milbank Memorial Fund
DAVID B. PRYOR, Ascension, Ascension Clinical Holdings
TRISH RILEY, National Academy for State Health Policy
WILLIAM SAGE, Dell Medical School, University of Texas at Austin School of Law
SHARYL NASS, Director
This page intentionally left blank.
This Proceedings of a Workshop was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.
We thank the following individuals for their review of this proceedings: Graham A. Colditz, Prevention and Control, Siteman Cancer Center, Washington University School of Medicine; Kelly J. Devers, Health Care, NORC at the University of Chicago; Peggye Dilworth-Anderson, Gillings School of Global Public Health, University of North Carolina at Chapel Hill; and Amy Kilbourne, Department of Psychiatry, University of Michigan, and Quality Enhancement Research Initiative, Department of Veterans Affairs.
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the content of the proceedings nor did they see the final draft before its release. The review of this proceedings was overseen by Constantine Gatsonis, School of Public Health, Brown University. He was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies.
This page intentionally left blank.