This Proceedings of a Workshop summarizes the presentations and discussions at the Workshop on Improving Consent and Response in Longitudinal Studies of Aging, which was held virtually and live-streamed on September 27-28, 2021. The workshop was convened by the Committee on National Statistics of the National Academies of Science, Engineering, and Medicine to assist the National Institute on Aging (NIA) with its methodological research agenda and inform the different longitudinal survey programs sponsored by NIA about practices and research to improve response and consent in other survey programs. The workshop was structured to bring together scientists and researchers from multiple disciplines and countries to share their research and insights on how to improve response and consent in large, representative longitudinal studies on aging.

Contents

• The National Academies of SCIENCES • ENGINEERING • MEDICINE
• PLANNING COMMITTEE ON IMPROVING CONSENT AND RESPONSE IN LONGITUDINAL STUDIES OF AGING
• COMMITTEE ON NATIONAL STATISTICS
• Acknowledgments
• 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
• COMMITTEE ON NATIONAL STATISTICS

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.

Digital Object Identifier: https://doi.org/10.17226/26481

This publication is available 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.

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