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

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dc.contributor.authorCronin, Robert M.
dc.contributor.authorJerome, Rebecca N.
dc.contributor.authorMapes, Brandy
dc.contributor.authorAndrade, Regina
dc.contributor.authorJohnston, Rebecca
dc.contributor.authorAyala, Jennifer
dc.contributor.authorSchlundt, David
dc.contributor.authorBonnet, Kemberlee
dc.contributor.authorKripalani, Sunil
dc.contributor.authorGoggins, Kathryn
dc.contributor.authorWallston, Kenneth A.
dc.contributor.authorCouper, Mick P.
dc.contributor.authorEllitt, Michael R.
dc.contributor.authorHarris, Paul
dc.contributor.authorBegale, Mark
dc.contributor.authorMunoz, Fatima
dc.contributor.authorLopez-Class, Maria
dc.contributor.authorCella, David
dc.contributor.authorCondon, David
dc.contributor.authorAuYoung, Mona
dc.contributor.authorMazor, Kathleen M.
dc.contributor.authorMikita, Steve
dc.contributor.authorManganiello, Michael
dc.contributor.authorBorselli, Nicholas
dc.contributor.authorFowler, Stephanie
dc.contributor.authorRutter, Joni L.
dc.contributor.authorDenny, Joshua C.
dc.contributor.authorKarlson, Elizabeth W.
dc.contributor.authorAhmedani, Brian K.
dc.contributor.authorO'Donnell, Chris
dc.date.accessioned2022-07-12T18:07:17Z
dc.date.available2022-07-12T18:07:17Z
dc.date.issued2019-07
dc.description24 pages. This is not the final published version.en_US
dc.description.abstractBackground: 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.en_US
dc.description.sponsorshipSources of financial support: This work was funded by the National Institutes of Health (https://allofus.nih.gov/) OT2OD023132 (RMC, RNJ, BMM, RA, RJ, JA, DGS, KRB, SK, KG, KAW, MPC, MRE, PAH, and JCD), U2COD023196 (JCD), R01AG0532641U24OD023163–01 (MJB), HHSM500201200008I/HHSN263201800208U (FAM), U2CCA186878 (DC), U24 OD023176 (MA), 3OTOD 024610–01S1 (KMM), OT2OD023206 (MM, NB), 1OT2OD026553 (EWK), and OT2OD026550 (BKA). Additional support included the National Heart, Blood, and Lung Institute (https://www.nhlbi.nih.gov/) K23HL141447 (RMC), United States Veteran’s Administration Healthcare System (CJO), the National Institute on Aging (https://www.nia.nih.gov/) U2C AG060426–01 (DMC). Program staff of the funding organization, National Institutes of Health, co-contributed to this work through conceptualization, methodology, validation, project administration and review and editing of this manuscript.en_US
dc.identifier.citationCronin, Robert M.a,b; Jerome, Rebecca N.c; Mapes, Brandyc; Andrade, Reginac; Johnston, Rebeccac; Ayala, Jenniferc; Schlundt, Davidd; Bonnet, Kemberleed; Kripalani, Sunile,f,g; Goggins, Kathryne,f,g; Wallston, Kenneth A.h; Couper, Mick P.i,j; Elliott, Michael R.k,l; Harris, Paulc; Begale, Markm; Munoz, Fatiman; Lopez-Class, Mariao; Cella, Davidp; Condon, Davidp; AuYoung, Monaq; Mazor, Kathleen M.r; Mikita, Steves; Manganiello, Michaelt; Borselli, Nicholast; Fowler, Stephanieo; Rutter, Joni L.o; Denny, Joshua C.a; Karlson, Elizabeth W.u; Ahmedani, Brian K.v; O’Donnell, Christopher J.w,x; the Vanderbilt University Medical Center Pilot Team, and the Participant Provided Information Committee Development of the Initial Surveys for the All of Us Research Program, Epidemiology: July 2019 - Volume 30 - Issue 4 - p 597-608 doi: 10.1097/EDE.0000000000001028en_US
dc.identifier.doihttps://doi.org/10.1097/ede.0000000000001028en_US
dc.identifier.urihttps://hdl.handle.net/1794/27245
dc.identifier.urihttps://pubmed.ncbi.nlm.nih.gov/31045611/en_US
dc.language.isoenen_US
dc.publisherEpidemiologyen_US
dc.rightsCreative Commons BY-NC-ND 4.0-USen_US
dc.subjectHealth surveysen_US
dc.subjectPrecision medicineen_US
dc.subjectQuestionnairesen_US
dc.subjectCohort studiesen_US
dc.subjectCognitive interviewsen_US
dc.subjectOnline surveysen_US
dc.titleDevelopment of the Initial Surveys for the All of Us Research Programen_US
dc.typeArticleen_US

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