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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 597-608 |
| Number of pages | 12 |
| Journal | Epidemiology |
| Volume | 30 |
| Issue number | 4 |
| DOIs | |
| State | Published - Jul 1 2019 |
Funding
We wish to thank our participants who have joined All of Us and contributed to participant-provided information; helped refine early materials; engaged in the development and evaluation of the surveys, and provided other ongoing feedback. We thank the countless other coinvestigators and staff across all awardees and partners without which All of Us would not have achieved our current goals. All of Us is supported by grants through the National Institutes of Health Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. Pilot Team: OT2 OD023132, OT2 OD023132-02S1, K23HL141447. This work was funded by the National Institutes of Health (https://allo-fus.nih.gov/) OT2OD023132 (R.M.C., R.N.J., B.M.M., R.A., R.J., J.A., D.G.S., K.R.B., S.K., K.G., K.A.W., M.P.C., M.R.E., P.A.H., and J.C.D.), U2COD023196 (J.C.D.), R01AG0532641U24OD023163-01 (M.J.B.), HHSM500201200008I/HHSN263201800208U (F.A.M.), U2CCA186878 (D.C.), U24 OD023176 (M.A.), 3OTOD 024610-01S1 (K.M.M.), OT2OD023206 (M.M. and N.B.), 1OT2OD026553 (E.W.K.), and OT2OD026550 (B.K.A.). Additional support included the Na-tional Heart, Blood, and Lung Institute (https://www.nhlbi.nih.gov/) K23HL141447 (R.M.C.), United States Veteran’s Administration Health-care System (C.J.O.), the National Institute on Aging (https://www.nia. nih.gov/) U2C AG060426-01 (D.M.C.). Program staff of the funding organization, National Institutes of Health, co-contributed to this work Copyright 2019 Wolters Kluwer Health, Inc. All rights reserved. ISSN: 1044-3983/19/3004-0597 DOI: 10.1097/EDE.0000000000001028 through conceptualization, methodology, validation, project administra-tion and review and editing of this manuscript. The authors report no conflicts of interest. Supplemental digital content is available through direct URL citations in the HTML and PDF versions of this article (www.epidem.com). Data availability: All relevant data are within the manuscript and its Support-ing Information files or are available from http://researchallofus.org. Correspondence: Robert M. Cronin, Department of Biomedical Informatics, Vanderbilt University Medical Center, 2525 West End Blvd., Suite 1475, Nashville, TN 37232. E-mail: [email protected]. We wish to thank our participants who have joined All of Us and contributed to participant-provided information; helped refine early materials; engaged in the development and evaluation of the surveys, and provided other ongoing feedback. We thank the countless other coinvestigators and staff across all awardees and partners without which All of Us would not have achieved our current goals. All of Us is supported by grants through the National Institutes of Health Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. Pilot Team: OT2 OD023132, OT2 OD023132-02S1, K23HL141447.
Keywords
- Cognitive interviews
- Cohort studies
- Health surveys
- Online surveys
- Precision medicine
- Questionnaires
ASJC Scopus subject areas
- Epidemiology