From the aDepartment of Biomedical Informatics and Internal Medicine, Vanderbilt University Medical Center, Nashville, TNbDepartment of Pediatrics, Vanderbilt University Medical Center, Nashville, TNcVanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TNdDepartment of Psychology, Vanderbilt University, Nashville, TNeDepartment of Medicine, Vanderbilt University School of Medicine, Nashville, TNfCenter for Clinical Quality and Implementation Research, Vanderbilt University Medical Center, Nashville, TNgCenter for Effective Health Communication, Vanderbilt University Medical Center, Nashville, TNhInstitute for Medicine and Public Health, Vanderbilt University Medical Center, Nashville, TNiSurvey Research Center, University of Michigan. Ann Arbor, MIjJoint Program in Survey Methodology, University of Maryland, College Park, MDkDepartment of Biostatistics, School of Public Health, University of Michigan, Ann Arbor, MIlSurvey Research Center, Institute for Social Research, University of Michigan, Ann Arbor, MImVibrent Health, Fairfax, VAnDepartment of Research and Health Promotion, San Ysidro Health, San Diego, CAoNational Institutes of Health, Office of the Director, Bethesda, MDpDepartment of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, ILqScripps Whittier Diabetes Institute, Scripps Health, San Diego, CArMeyers Primary Care Institute, Worcester, MAsSpinal Muscular Atrophy Foundation, New York, NYtHCM Strategists, Washington, DCuDivision of Rheumatology, Allergy, and Immunology, Department of Medicine, Section of Clinical Sciences, Brigham and Women’s Hospital, Boston, MAvCenter for Health Policy & Health Services Research, Henry Ford Health System, Detroit, MIwCardiology Section, Department of Medicine, Veterans Affairs Boston Healthcare System, Boston, MAxCardiovascular Medicine Division, Department of Medicine, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA.
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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.