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Epidemiology. 2019 Jul;30(4):597-608. doi: 10.1097/EDE.0000000000001028.

Development of the Initial Surveys for the All of Us Research Program.

Author information

1
From the Department of Biomedical Informatics and Internal Medicine, Vanderbilt University Medical Center, Nashville, TN.
2
Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN.
3
Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN.
4
Department of Psychology, Vanderbilt University, Nashville, TN.
5
Department of Medicine, Vanderbilt University School of Medicine, Nashville, TN.
6
Center for Clinical Quality and Implementation Research, Vanderbilt University Medical Center, Nashville, TN.
7
Center for Effective Health Communication, Vanderbilt University Medical Center, Nashville, TN.
8
Institute for Medicine and Public Health, Vanderbilt University Medical Center, Nashville, TN.
9
Survey Research Center, University of Michigan. Ann Arbor, MI.
10
Joint Program in Survey Methodology, University of Maryland, College Park, MD.
11
Department of Biostatistics, School of Public Health, University of Michigan, Ann Arbor, MI.
12
Survey Research Center, Institute for Social Research, University of Michigan, Ann Arbor, MI.
13
Vibrent Health, Fairfax, VA.
14
Department of Research and Health Promotion, San Ysidro Health, San Diego, CA.
15
National Institutes of Health, Office of the Director, Bethesda, MD.
16
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL.
17
Scripps Whittier Diabetes Institute, Scripps Health, San Diego, CA.
18
Meyers Primary Care Institute, Worcester, MA.
19
Spinal Muscular Atrophy Foundation, New York, NY.
20
HCM Strategists, Washington, DC.
21
Division of Rheumatology, Allergy, and Immunology, Department of Medicine, Section of Clinical Sciences, Brigham and Women's Hospital, Boston, MA.
22
Center for Health Policy & Health Services Research, Henry Ford Health System, Detroit, MI.
23
Cardiology Section, Department of Medicine, Veterans Affairs Boston Healthcare System, Boston, MA.
24
Cardiovascular Medicine Division, Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, MA.

Abstract

BACKGROUND:

The All of Us Research Program is building a national longitudinal cohort and collecting data from multiple information sources (e.g., biospecimens, electronic health records, and mobile/wearable technologies) to advance precision medicine. Participant-provided information, collected via surveys, will complement and augment these information sources. We report the process used to develop and refine the initial three surveys for this program.

METHODS:

The All of Us survey development process included: (1) prioritization of domains for scientific needs, (2) examination of existing validated instruments, (3) content creation, (4) evaluation and refinement via cognitive interviews and online testing, (5) content review by key stakeholders, and (6) launch in the All of Us electronic participant portal. All content was translated into Spanish.

RESULTS:

We conducted cognitive interviews in English and Spanish with 169 participants, and 573 individuals completed online testing. Feedback led to over 40 item content changes. Lessons learned included: (1) validated survey instruments performed well in diverse populations reflective of All of Us; (2) parallel evaluation of multiple languages can ensure optimal survey deployment; (3) recruitment challenges in diverse populations required multiple strategies; and (4) key stakeholders improved integration of surveys into larger Program context.

CONCLUSIONS:

This efficient, iterative process led to successful testing, refinement, and launch of three All of Us surveys. Reuse of All of Us surveys, available at http://researchallofus.org, may facilitate large consortia targeting diverse populations in English and Spanish to capture participant-provided information to supplement other data, such as genetic, physical measurements, or data from electronic health records.

PMID:
31045611
PMCID:
PMC6548672
[Available on 2020-07-01]
DOI:
10.1097/EDE.0000000000001028

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