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Nancy Kirkendall - Improving Health Research on Small Populations: Proceedings of a Workshop

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Nancy Kirkendall Improving Health Research on Small Populations: Proceedings of a Workshop
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The increasing diversity of population of the United States presents many challenges to conducting health research that is representative and informative. Dispersion and accessibility issues can increase logistical costs; populations for which it is difficult to obtain adequate sample size are also likely to be expensive to study. Hence, even if it is technically feasible to study a small population, it may not be easy to obtain the funding to do so. In order to address the issues associated with improving health research of small populations, the National Academies of Sciences, Engineering, and Medicine convened a workshop in January 2018. Participants considered ways of addressing the challenges of conducting epidemiological studies or intervention research with small population groups, including alternative study designs, innovative methodologies for data collection, and innovative statistical techniques for analysis.

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Appendix A
Agenda and List of Participants
AGENDA
DAY 1: Thursday, January 18, 8:30 AM - 5:00 PM (NAS Lecture Room)
8:00-8:30 AMRegistration (East Court)
8:30WELCOME AND INTRODUCTIONS
MODERATOR: Graham Colditz, Committee Chair, Washington University in St. Louis

8:35 Welcome to the National Academy of Sciences Brian Harris-Kojetin, Director, Committee on National Statistics, National Academies of Sciences, Engineering, and Medicine

8:45 Motivation and Objectives for the Workshop Robert T. Croyle, Director, Division of Cancer Control and Population Sciences, National Cancer Institute

9:00SESSION 1: What Do We Mean by Small Populations?
How to Decide When a Small Population Is Important or Meaningfully Different Enough to Study?
MODERATOR: Graham Colditz, Committee Chair, Washington University in St. Louis

9:05 Howard Koh, Harvard T.H. Chan School of Public Health, The Importance of Health Research on Small Populations

9:35 Scarlett Lin Gomez, University of California, San Francisco, Data Issues in Studying Small Populations: Challenges, Opportunities, and a Case Study

9:50 Lisa Signorello, Division of Cancer Prevention, National Cancer Institute, Fielding Studies in Underrepresented Populations: Challenges and Considerations

10:05 Floor Discussion

10:20BREAK
10:40SESSION 2: Challenges in Using Available Data for Small Population Health Research
MODERATOR: Lance Waller, Committee Member, Emory University

10:45 Kelly Devers, NORC, The Feasibility of Using Electronic Health Records and Electronic Health Data for Research on Small Populations

11:05 Chris Fowler, Pennsylvania State University, Using Geospatial Methods with Demographic Data to Identify Populations

11:25 Ellen Cromley, Consultant, Using Geospatial Methods with Other Health and Environmental Data to Identify Populations

11:45 Floor Discussion

12:00 PMLUNCH
1:00SESSION 3: Techniques Used in Survey Research to Identify and Find Small Populations for Health Research
MODERATOR: Graham Kalton, Committee Member, Westat

1:05 Marc Elliott, RAND, Probability Sampling Methods for Small Populations

1:25 Sunghee Lee, University of Michigan, Two Applications of Respondent Driven Sampling: Ethnic Minorities and Illicit Substance Users

1:45 Patrick Sullivan, Emory University, Venue-Based and On-line Sampling

2:05 Krista Gile, University of Massachusetts Amherst, Invited Discussant

2:25 Floor Discussion

2:45BREAK
3:00SESSION 4: New and Emerging Designs for Intervention Studies
MODERATOR: James Allen, Committee Member, University of Minnesota Medical School

3:05 Amy M. Kilbourne, University of Michigan, Designs for Dissemination and Implementation Research for Small Populations

3:35 Christine Lu, Harvard Medical School, Quasi-experimental Designs with Application to Small Populations

3:55 Diane Korngiebel, University of Washington, Addressing the Challenges of Research with Small Populations

4:15 Patrick H. Tolan, University of Virginia, Invited Discussant

4:35 Floor Discussion

5:00 PMADJOURN
DAY 2: Friday, January 19, 8:30 AM - 2:00 PM (NAS Lecture Room)
8:30 AMWelcome to Day 2
MODERATOR: Graham Colditz, Committee Chair, Washington University in St. Louis

8:40 SESSION 5: Recruitment, Retention, and Collection of Data with a Focus on Small or Hard to Reach Populations
MODERATOR: Jan Probst, Committee Member, University of South Carolina

8:45 Vetta Sanders Thompson, Washington University in St. Louis, Issues and Challenges Associated with Recruitment and Retention for Health Research

9:05 F. Douglas Scutchfield, University of Kentucky, Improving Health Research in Rural Areas

9:25 Kathi Mooney, University of Utah, Using Technology for Recruitment, Retention, Data Collection, and Intervention Delivery

9:45 Tracy L. Onega, Dartmouth College, Invited Discussant

10:05 Floor Discussion

10:20BREAK
10:40SESSION 6: Analysis Techniques for Small Population Research
MODERATOR: Lance Waller, Committee Member, Emory University

10:45 Rick H. Hoyle, Duke University, Design and Analysis Considerations in Research with Small Samples

11:05 Thomas A. Louis, Johns Hopkins Bloomberg School of Public Health, Bayesian Methods for Small Population Analysis

11:25 Katherine R. McLaughlin, Oregon State University, Estimating the Size of Hidden Populations

11:45 Floor Discussion

12:00 PMLUNCH
1:00SESSION 7: Wrap-up and Concluding Remarks
MODERATOR: Gordon Willis, National Cancer Institute

1:00 Steering Committee, Panel DiscussionNext Steps in Improving Health Research for Small Populations

1:30 Floor Discussion

2:00 PMADJOURN
PARTICIPANT LIST
Steering Committee Members

Graham Colditz (Chair), Niess-Gain Professor of Surgery, Washington University School of Medicine

James Allen, Professor, Department of Biobehavioral Health and Population Sciences, University of Minnesota Medical School

Graham Kalton, Chairman and Senior Vice President, Westat

Janice Probst, Professor, Department of Health Services Policy and Management, University of South Carolina, Arnold School of Public Health

Lance Waller, Rollins Professor and Chair, Department of Biostatistics and Bioinformatics, Emory University, Rollins School of Public Health

Sponsors

David Berrigan, Program Director, Behavioral Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute (NCI), National Institutes of Health (NIH)

Robert Croyle, Director, Division of Cancer Control and Population Sciences, NCI, NIH

Rina Das, Program Director, Division of Extramural Scientific Programs, National Institute on Minority Health and Health Disparities (NIMHD), NIH

Richard Moser, Training Director, Division of Cancer Control and Population Sciences, NCI, NIH

Alonzo Plough, Vice President, Research Evaluation Learning and Chief Science Officer, Robert Wood Johnson Foundation

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