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

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

Robert M Cronin  1   2 , Rebecca N Jerome  3 , Brandy Mapes  3 , Regina Andrade  3 , Rebecca Johnston  3 , Jennifer Ayala  3 , David Schlundt  4 , Kemberlee Bonnet  4 , Sunil Kripalani  5   6   7 , Kathryn Goggins  5   6   7 , Kenneth A Wallston  8 , Mick P Couper  9   10 , Michael R Elliott  11   12 , Paul Harris  3 , Mark Begale  13 , Fatima Munoz  14 , Maria Lopez-Class  15 , David Cella  16 , David Condon  16 , Mona AuYoung  17 , Kathleen M Mazor  18 , Steve Mikita  19 , Michael Manganiello  20 , Nicholas Borselli  20 , Stephanie Fowler  15 , Joni L Rutter  15 , Joshua C Denny  1 , Elizabeth W Karlson  21 , Brian K Ahmedani  22 , Christopher J O'Donnell  23   24 ; Vanderbilt University Medical Center Pilot Team, and the Participant Provided Information Committee
Affiliations

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

Robert M Cronin et al. Epidemiology. 2019 Jul.

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.

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Conflict of interest statement

Conflicts of interest: The authors have no conflicts of interest

Figures

Figure 1:
Figure 1:
Full process of creation, testing, and approval of the English survey materials.
Figure 2:
Figure 2:
Full process of creation, testing, and approval of the Spanish survey materials.
Figure 3:
Figure 3:. Online testing through Pilot Expression of Interest website.
REDCap was used as the engine for questionnaire testing. For this project, we developed the ability to answer a feedback questionnaire for any question.
See this image and copyright information in PMC

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