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The National Academies of Sciences, Engineering and Medicine
Committee on National Statistics
Division of Behavioral and Social Sciences and Education

Improving Health Research on Small Populations: Proceedings of a Workshop



Small Population HealthThis publication from the Committee on National Statistics summarizes a workshop that took place in January 2018 that 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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PROJECT DESCRIPTION
An ad hoc steering committee will organize a one and a half day public workshop sponsored by the National Cancer Institute, National Institutes of Health, to discuss issues of conducting research on small, underrepresented population subgroups in health research. There continue to be communities that are often difficult to include in research studies because of the size, dispersion, and/or accessibility of the subpopulation, and the workshop will consider ways of addressing the challenges of research and interventions with small population groups, including alternative study designs, innovative methodologies, and innovative statistical techniques.

Specifically, the workshop will address approaches for identification, recruitment, and retention strategies for maximizing the sample sizes of small groups in intervention and research studies; epidemiological design and analytics approaches for small samples; and intervention design and analytic approaches for subpopulations. Background papers will be commissioned and distributed in advance of the workshop. A proceedings of the workshop and a brief proceedings of a workshop will be prepared by a rapporteur and reviewed according to institutional policy. Presentation materials will be posted on the Internet.

This project is a collaboration between the Committee on National Statistics in the Division of Behavioral and Social Sciences and Education (DBASSE) and the Health and Medicine Division (HMD) of the National Academies.

The National Cancer Institute (NCI), the National Institute on Minority Health and Disparities (NIMHD), and the Office of Behavioral and Social Sciences Research (OBSSR) of the National Institutes of Health are co-sponsors of this workshop. Support for this workshop was also provided, in part, by the Robert Wood Johnson Foundation. The views expressed here do not necessarily reflect the views of the Foundation.

WORKSHOP MATERIALS 
Thursday, January 18 - Friday, January 19, 2018

AGENDA


Location:
National Academy of Sciences Building
2101 Constitution Avenue NW
Washington, DC 20418
Lecture Room 
 
WEBCAST VIDEOS & PRESENTATIONS    
     
Introductory Session

MODERATOR: Graham Colditz, Committee Chair, Washington University in St. Louis, Opens the
Brian Harris-Kojetin, Director, Committee on National Statistics, National Academy of Sciences, Engineering, and Medicine
Robert T. Croyle, Director, Division of Cancer Control and Population Sciences, National Cancer Institute, Motivation and Objectives for the Workshop
 
 
 
SESSION I: What do we Mean by Small Populations? How to Decide when a Small Population is Important or Meaningfully Different Enough to Study? Why did we Structure the Workshop this Way?

MODERATOR: Graham Colditz, Committee Chair, Washington University in St. Louis
Howard Koh, Harvard T.H. Chan School of Public Health, The Importance of Health Research on Small Populations
Scarlett Lin Gomez, University of California, San Francisco, Data Issues in Studying Small Populations: Challenges, Opportunities, and a Case Study
Lisa Signorello, Division of Cancer Prevention, National Cancer Institute, Fielding Studies in Underrepresented Populations: Challenges and Considerations 
Floor discussion 
     

 
     
 
     
   
     
SESSION 2: Challenges in Using Available Data for Small Population Health Research

MODERATOR: Lance Waller, Committee Member, Emory University
Kelly Devers, NORC, The Feasibility of Using Electronic Health Records (EHRs) and Other Electronic Health Data for Research on Small Populations
Chris Fowler, Pennsylvania State University, The Geography of Small Populations: Issues in Defining an Appropriate Geographic Context
Ellen Cromley, Consultant, Using Geospatial Methods with Other Health and Environmental Data to Identify Populations
Floor discussion
     
 
     

 
     

   
     
SESSION 3: Techniques Used in Survey Research to Identify and Find Small Populations for Health Research

MODERATOR: Graham Kalton, Committee Member, Westat
Marc Elliot, Rand, Probability Sampling Methods for Small Populations
Sunghee Lee, University of Michigan, Two Applications of Respondent Driven Sampling: Ethnic Minorities and Illicit Substance Users
Patrick Sullivan, Emory University, Venue-Based and On-line Sampling
Krista Gile, University of Massachusetts, Amherst, Invited Discussant (Techniques to Identify and Find Small Populations)
Floor discussion
 

 
     

 
     

 
     
SESSION 4: New and Emerging Designs for Intervention Studies

MODERATOR: James Allen, Committee Member, University of Minnesota Medical School
Amy M. Kilbourne, University of Michigan, Designs for Dissemination and Implementation Research for Small Populations
Christine Lu, Harvard Medical School, Quasi-experimental Designs with Application to Small Populations
Diane Korngiebel, University of Washington, Addressing the Challenges of Research with Small Populations
Patrick H. Tolan, University of Virginia, Invited Discussant
Floor Discussion 
 

 
     

 
     

 
     
Welcome to Second day MODERATOR: Graham Colditz, Committee Chair, Washington University in St. Louis

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
Vetta Sanders-Thompson, Washington University in St. Louis, Issues and Challenges Associated with Recruitment and Retention for Health Research
F. Douglas Scutchfield, University of Kentucky, Improving Health Research in Rural Areas : The Case of Kentucky
Kathi Mooney, University of Utah, Using Technology for Recruitment, Retention. Data Collection, and Intervention Delivery
Tracy L. Onega, Dartmouth University, Invited Discussant (Recruitment, Retention, and Collection of Data With a Focus on Small or Hard to Reach Populations)
Floor Discussion  
 

 
     

 
     

 
     

   
     
SESSION 6: Analysis Techniques for Small Population Research

MODERATOR: Lance Waller, Committee Member, Emory University
Rick H. Hoyle, Duke University, Design and Analysis Considerations in Research with Small Samples
Thomas A. Louis, Johns Hopkins Bloomberg School of Public Health, Bayesian Methods for Small Population Analysis
Katherine R. McLaughlin, Oregon State University, Estimating the Size of Hidden Populations
Floor Discussion
 

 
     

 
     

   
     
SESSION 7: Wrap-up and Concluding Remarks

MODERATOR: Gordon Willis, National Cancer Institute
Steering Committee Panel Discussion – Next Steps in Improving Health Research for Small Populations (Graham Colditz, James Allen, Graham Colditz, Jan Probst, Lance Waller)
Floor Discussion
 

   
     

STEERING COMMITTEE MEMBERS 
Graham A. Colditz (Chair), School of Medicine, Washington University, St. Louis 
James Allen, Department of Family Medicine and Biobehavioral Health, University of Minnesota Medical School, Duluth Campus
C. Graham Kalton, Westat
Janice C. Probst, Department of Health Services Policy and Management, University of South Carolina 
Lance A. Waller, Rollins School of Public Health, Emory University 

 

Member Bios

STAFF 
Nancy Kirkendall, Study Director
Jordyn White, Program Officer
Anthony Mann, Program Associate

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