Summary
This paper describes the rigorous, iterative process used to develop and validate three initial surveys for the All of Us Research Program, a national precision medicine cohort. The methodology combined cognitive interviews, online testing, stakeholder review, and parallel English-Spanish translation to optimise survey instruments for diverse populations. The authors demonstrate that systematic survey development with inclusive population testing and multilingual evaluation can efficiently produce robust instruments suitable for large health research consortia.
UK applicability
The survey development methodology and lessons learned (particularly regarding validated instrument performance in diverse populations and parallel multilingual evaluation) are transferable to UK population health research initiatives. However, direct application of these specific All of Us surveys would require UK contextual adaptation and validation.
Key measures
Number of cognitive interviews conducted (169 in English and Spanish); online test participants (573); number of survey item content changes (40+); language translation parallel evaluation; stakeholder integration assessment
Outcomes reported
The study reported the systematic development and refinement process for three initial surveys in the All of Us Research Program, including cognitive interview findings (169 participants), online testing results (573 participants), and iterative content modifications (over 40 item changes). The surveys were successfully translated into Spanish and deployed via an electronic participant portal.
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