Development of the Initial Surveys for the All of Us Research Program
| Autor: | Michael R. Elliott, Mona AuYoung, Christopher J. O'Donnell, Mark Begale, Kemberlee Bonnet, Sunil Kripalani, David Cella, Paul A. Harris, Jennifer E. Ayala, Robert M. Cronin, Nicholas Borselli, Steve Mikita, Stephanie L. Fowler, Michael Manganiello, Kenneth A. Wallston, Regina Andrade, Rebecca N Jerome, David M. Condon, Brandy Mapes, Elizabeth W. Karlson, Brian K. Ahmedani, Mick P. Couper, Kathleen M. Mazor, Joni L. Rutter, Kathryn Goggins, David G. Schlundt, Maria Lopez-Class, Fatima Munoz, Joshua C. Denny, Rebecca Johnston |
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| Rok vydání: | 2019 |
| Předmět: |
Adult
Male Research program Adolescent Epidemiology Computer science MEDLINE Pilot Projects Health records 01 natural sciences Article Young Adult 010104 statistics & probability 03 medical and health sciences 0302 clinical medicine Humans Translations Longitudinal Studies 030212 general & internal medicine Precision Medicine 0101 mathematics Longitudinal cohort Qualitative Research Wearable technology Aged Aged 80 and over Medical education business.industry Extramural Middle Aged Precision medicine Health Surveys United States Female Factor Analysis Statistical business |
| Zdroj: | Epidemiology |
| ISSN: | 1044-3983 |
| DOI: | 10.1097/ede.0000000000001028 |
| Popis: | 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 (EHRs), 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 EHRs. |
| Databáze: | OpenAIRE |
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