Development of the Initial Surveys for the All of Us Research Program.
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...
| Publicado en: | Epidemiology Vol. 30; no. 4; pp. 597 - 609 |
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| Autores principales: | , , , , , , , , , , , , , , , , , , , |
| Formato: | research Journal Article |
| Publicado: |
Lippincott Williams & Wilkins
Jul2019
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=136942215&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 136942215 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10443983 N07 jtl: Epidemiology issn: 10443983 maglogo: N pubinfo: dt: Jul2019 vid: 30 iid: 4 pid: 433 pub: Lippincott Williams & Wilkins place: Baltimore, Maryland artinfo: ui: 136942215 136942215 NLM31045611 136942215 10.1097/EDE.0000000000001028 NLM31045611 136942215 ppf: 597 ppct: 12 formats: tig: atl: Development of the Initial Surveys for the All of Us Research Program. aug: au: Cronin, Robert M. Jerome, Rebecca N. Mapes, Brandy Andrade, Regina Johnston, Rebecca Ayala, Jennifer Schlundt, David Bonnet, Kemberlee Kripalani, Sunil Goggins, Kathryn Wallston, Kenneth A. Couper, Mick P. Elliott, Michael R. Harris, Paul Begale, Mark Munoz, Fatima Lopez-Class, Maria Cella, David Condon, David AuYoung, Mona affil: From the Department of Biomedical Informatics and Internal Medicine, Vanderbilt University Medical Center, Nashville, TN sug: subj: Surveys Factor Analysis Male Adult Female United States Qualitative Studies Human Middle Age Pilot Studies Adolescence Young Adult Aged Prospective Studies Aged, 80 and Over Translations Validation Studies Comparative Studies Evaluation Research Multicenter Studies Adult: 19-44 years Middle Aged: 45-64 years Adolescent: 13-18 years Aged: 65+ years Aged, 80 & over Male Female ab: 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. pubtype: Academic Journal doctype: research Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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