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Introduction

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 (CNSTAT) 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. The workshop agenda is provided in Appendix A. Biographical sketches of the steering committee members and workshop presenters are included in Appendix B.

The mission of CNSTAT is to provide advice to the federal government and the nation grounded in the current best scientific knowledge and practice that will lead to improved statistical methods and information upon which to base public policy. CNSTAT seeks to advance the quality of statistical information, contribute to the statistical policies and coordinating activities of the federal government, and help provide a forward-looking vision for the federal statistical system and national statistics more broadly in service of the public good. In introductory remarks, CNSTAT’s director, Brian Harris-Kojetin, thanked NIA for the opportunity to convene this workshop.

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

John Phillips, chief of the Population and Social Processes Branch (PSP) of the NIA Division of Behavioral and Social Research (BSR), introduced the reason behind the workshop by underscoring that survey response and retention rates are declining across longitudinal and cross-sectional studies around the world. Given the importance of this subject to so many research enterprises, a body of published research has emerged on protocols intended to explore these issues. However, he said, much of this research focuses on cross-sectional surveys or is not directed toward midlife or older populations or rare populations of interest for studies of health disparities. He suggested greater understanding of the factors that limit consent and response in surveys could lead to better ways to inform participants about the benefits of study participation and risks of consent, as well as provide significant value to both aging studies and to the survey research literature.

NIA supports several nationally representative longitudinal studies, each with unique structural features to facilitate research on various dimensions of health and aging. NIA-supported longitudinal studies collect data covering many domains, including socioeconomic factors, self-reported and objective measures of health, cognition, personality, family structure, health care utilization and care needs, and even genetics. Some of these studies also include collection of blood samples or saliva, which typically require separate consent than the survey itself.

In addition, Phillips noted that the longitudinal studies that NIA supports often seek to link the survey data with federal program data, such as Social Security Administration records on earnings, and these linkages require separate consent. Combining survey, biological, and administrative data together provides a much more complete picture of life course health and aging, with objective measurement of important domains, and in some instances, less burden on respondents to provide information. However, increasing the number of questions asked, requesting biological samples, and asking permission to link to other government records can lead some respondents to reject one or more of those protocols or the study entirely, threatening the representativeness of the sample and quality of the data obtained.

Phillips summarized some recommendations from the 2019 National Advisory Council on Aging (NACA) review of BSR’s extramural program related to response and consent rates in NIA-supported nationally representative longitudinal studies of aging. The top NACA recommendation was to focus on investigations of various disparities in health at older ages, which requires diverse representative national samples with high response and consent rates to limit the risk of nonresponse bias. The NACA

recommendations also explicitly encouraged the continued collection and linkage of biology and program administrative data to NIA-supported studies, and recommended prioritizing research to develop new and more efficient methods for recruiting and retaining study participants to ensure samples are population representative.

Phillips concluded by saying that NIH has partnered with CNSTAT to convene the workshop to obtain expert opinion on how to improve response/retention and enhance consent protocols for biomarker and administrative data linkage in nationally representative longitudinal studies of older Americans to support innovative behavioral and social research on aging.

THE PLANNING COMMITTEE’S GOALS FOR THE WORKSHOP

The purpose of the workshop was “to discuss methods to improve response/retention and enhance consent protocols for biomarker and program (administrative) data linkage in nationally representative longitudinal studies of older Americans,” according to the statement of task (Box 1-1). Michael Davern, chair of the planning committee and senior vice president and director of the Public Health Research Department at NORC at the University of Chicago, described the plan and goals for the workshop. First, he said, workshop sessions would examine innovations in survey methods with a multidisciplinary approach, such as framing of questions and consent

protocols employing insights from psychology, behavioral economics, and other disciplines. Second, the workshop would examine messaging and participant engagement approaches to make sure learning from the best and newest approaches is being used to engage and keep respondents engaged in longitudinal studies. Third, sessions would discuss efforts to understand what would motivate consent for administrative record linkage and consent to specific biomarker and physical measure protocols and procedures. Davern noted that all three goals are essential to what survey researchers who are engaged in studying the science of aging need to do.

As Davern described, surveys are currently at a moment of crisis, but this is certainly not the first crisis in survey research. There have been many changes in methodologies and approaches through the years, including integrating cell phones with landline phone surveys, and then dealing with the loss of landlines. He said that researchers have dealt with falling participation rates across all survey modes and with increasing costs of data collection. Concurring with Phillips, Davern noted the recent concerns are nonresponse bias and representativeness of surveys.

For Davern, the key question is how to adapt and change as a result of this crisis. This, he stressed, is the challenge that the industry needs to address because staying the course and doing what has always been done is not a good idea. He noted that the speakers during the workshop would provide insight into this question and help illuminate strategies to adapt, change, and resolve this current crisis.

ORGANIZATION OF THE REPORT

This summary describes the workshop presentations and discussions that followed each topic.¹ The chapters are organized around the sessions of the workshop, which included overviews of NIA-sponsored studies, participation, informed consent, and data linkage. The final sessions of the workshop focused on innovation and a wrap-up discussion in which Phillips and committee members pulled out what they saw as key themes and messages from across the workshop to help NIA move the work in this area forward.

The full meeting agenda and biographical sketches of steering committee members and workshop presenters appear in the appendixes. This proceedings has been prepared by the workshop rapporteur as a factual summary of what occurred at the workshop. The planning committee’s role was limited to planning and convening the workshop. The views contained

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¹ Presenters’ slides and videos of the entire workshop are available at https://www.nationalacademies.org/event/09-27-2021/improving-consent-and-response-in-longitudinalstudies-of-aging-a-workshop.

in the proceedings are those of individual workshop participants and do not necessarily represent the views of all workshop participants, the planning committee, the National Institute on Aging, or the National Academies of Sciences, Engineering, and Medicine.

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