Improving Consent and Response
in Longitudinal Studies of Aging

PROCEEDINGS OF A WORKSHOP

Brian Harris-Kojetin, Rapporteur

Improving Consent and Response in Longitudinal Studies of Aging:
A Workshop

Committee on National Statistics

Division of Behavioral and Social Sciences and Education

THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001

This activity was supported by a contract between the National Academy of Sciences and the U.S. Department of Health and Human Services (award HHSN263201800029I/75N98020F00026). 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: 978-0-309-28670-1
International Standard Book Number-10: 0-309-28670-0
Digital Object Identifier: https://doi.org/10.17226/26481

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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2022. Improving Consent and Response in Longitudinal Studies of Aging: Proceedings of a Workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26481.

PLANNING COMMITTEE ON IMPROVING CONSENT AND RESPONSE IN LONGITUDINAL STUDIES OF AGING

MICHAEL DAVERN (Chair), Executive Vice President, NORC at the University of Chicago

MICK P. COUPER, Research Professor, University of Michigan

JENNIFER MADANS, retired, National Center for Health Statistics

SUNITA SAH, Associate Professor, University of Cambridge and Cornell University

VETTA SANDERS THOMPSON, Professor, Washington University in St. Louis

Study Staff

BRIAN HARRIS-KOJETIN, Study Director

REBECCA KRONE, Program Coordinator

COMMITTEE ON NATIONAL STATISTICS

ROBERT M. GROVES (Chair), Office of the Provost, Georgetown University

LAWRENCE D. BOBO, Department of Sociology, Harvard University

ANNE C. CASE, Princeton School of Public and International Affairs, Princeton University, Emeritus

MICK P. COUPER, Institute for Social Research, University of Michigan

JANET M. CURRIE, Princeton School of Public and International Affairs, Princeton University

DIANA FARRELL, JPMorgan Chase Institute, Washington, DC

ROBERT GOERGE, Chapin Hall at the University of Chicago

ERICA L. GROSHEN, School of Industrial and Labor Relations, Cornell University

HILARY HOYNES, Goldman School of Public Policy, University of California-Berkeley

DANIEL KIFER, Department of Computer Science and Engineering, The Pennsylvania State University

SHARON LOHR, School of Mathematical and Statistical Sciences, Arizona State University, Emeritus

JEROME P. REITER, Department of Statistical Science, Duke University

JUDITH A. SELTZER, Department of Sociology, University of California-Los Angeles, Emeritus

C. MATTHEW SNIPP, School of the Humanities and Sciences, Stanford University

ELIZABETH A. STUART, Department of Mental Health, Johns Hopkins Bloomberg School of Public Health

JEANNETTE WING, Data Science Institute and Computer Science Department, Columbia University

Staff

BRIAN HARRIS-KOJETIN, Director

MELISSA CHIU, Deputy Director

CONSTANCE F. CITRO, Senior Scholar

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 MICK P. COUPER, Institute for Social Research, University of Michigan, for his review of this proceedings. We also thank staff member Sheena Posey Norris for reading and providing helpful comments on this manuscript.

Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report nor did they see the final draft before its release. The review of this report was overseen by JUDITH SELTZER, Department of Sociology, University of California-Los Angeles, Emeritus. She was responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies.

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Contents

1 Introduction

THE NATIONAL INSTITUTE ON AGING’S PERSPECTIVE ON KEY ISSUES FOR THE WORKSHOP TO ADDRESS

THE PLANNING COMMITTEE’S GOALS FOR THE WORKSHOP

ORGANIZATION OF THE REPORT

2 Background and Context

OPPORTUNITIES AND CHALLENGES WITH RESPONSE AND CONSENT IN LONGITUDINAL SURVEYS ON AGING

IDENTIFYING AND REDUCING SELECTION BIAS

3 Participation

MAXIMIZING RESPONDENT RETENTION

PARTICIPANT ENGAGEMENT: INSIGHTS FROM BEHAVIORAL SCIENCE RESEARCH

4 Informed Consent

THE COMPLEXITY OF INFORMED CONSENT

ETHICAL CONSIDERATIONS FOR OBTAINING INFORMED CONSENT

5 Data Linkage and Innovation

DATA LINKAGE

LOOKING AHEAD: APPLYING INNOVATIVE STRATEGIES TO IMPROVE CONSENT AND RESPONSE

6 Wrap-Up Discussion

TAKE-HOME POINTS AND RESEARCH PRIORITIES

DISCUSSION OF ADDITIONAL PRIORITIES FOR FUTURE RESEARCH

NIA PERSPECTIVES ON THE WORKSHOP

References

Appendix A Public Meeting Agenda

Appendix B Committee and Speaker Biosketches

Box, Figures, and Tables

BOX

1-1 Statement of Task

FIGURES

2-1 Core interview response rates for the Health and Retirement Study, 1994–2020

2-2 Cumulative responses by wave and effort (cumulative number of call attempts)

3-1 Proportion of previous wave respondents who were re-interviewed at each wave shown separately by age group

4-1 How respondents decide whether to consent

4-2 NSHAP BioBox for remote collection in Round 4

5-1 Availability of survey and Medicare data

5-2 Model respondent’s decision whether to participate in additional tasks

5-3 The American Opportunity Study backbone and opportunities for survey linkages

5-4 Average absolute bias for variables from a past round and from the sampling frame from the 2013 Update of the High School Longitudinal Study of 2009

TABLES

2-1 MIDUS Response Rates

2-2 Add Health Longitudinal Design

2-3 Add Health Wave 5 Response and Consent Rates

2-4 CATI/CAPI Cross-Sectional Survey of Welfare Benefit Recipients in Germany (administrative records available for drawn sample)

2-5 Adjusting for Panel Nonresponse Bias Using Previous Wave(s) Survey Data

2-6 Treatments Used in 2016/2017 Baccalaureate and Beyond Longitudinal Study (B&B) Field Test

2-7 Results from 2016/2017 Baccalaureate and Beyond Longitudinal Study (B&B) Field Test

3-1 Results of Different Data Collection Procedures and Events on Re-engaging Nonrespondents and Continuing Participation of Respondents

4-1 NSHAP In-Person Biomeasure Cooperation Rates