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
Washington, DC
www.nap.edu
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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
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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.
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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
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Acknowledgments
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.
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Contents
2 What Do We Mean by “Small Populations”?
3 Challenges in Using Available Data for Small Population Health Research
4 Techniques Used in Survey Research to Identify and Find Small Populations for Health Research
5 New and Emerging Designs for Intervention Studies
6 Recruitment, Retention, and Collection of Data
7 Analysis Techniques for Small Population Research