Robert M Cronin1,2, Rebecca N Jerome3, Brandy Mapes3, Regina Andrade3, Rebecca Johnston3, Jennifer Ayala3, David Schlundt4, Kemberlee Bonnet4, Sunil Kripalani5,6,7, Kathryn Goggins5,6,7, Kenneth A Wallston8, Mick P Couper9,10, Michael R Elliott11,12, Paul Harris3, Mark Begale13, Fatima Munoz14, Maria Lopez-Class15, David Cella16, David Condon16, Mona AuYoung17, Kathleen M Mazor18, Steve Mikita19, Michael Manganiello20, Nicholas Borselli20, Stephanie Fowler15, Joni L Rutter15, Joshua C Denny1, Elizabeth W Karlson21, Brian K Ahmedani22, Christopher J O'Donnell23,24. 1. From the Department of Biomedical Informatics and Internal Medicine, Vanderbilt University Medical Center, Nashville, TN. 2. Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN. 3. Vanderbilt Institute for Clinical and Translational Research, Vanderbilt University Medical Center, Nashville, TN. 4. Department of Psychology, Vanderbilt University, Nashville, TN. 5. Department of Medicine, Vanderbilt University School of Medicine, Nashville, TN. 6. Center for Clinical Quality and Implementation Research, Vanderbilt University Medical Center, Nashville, TN. 7. Center for Effective Health Communication, Vanderbilt University Medical Center, Nashville, TN. 8. Institute for Medicine and Public Health, Vanderbilt University Medical Center, Nashville, TN. 9. Survey Research Center, University of Michigan. Ann Arbor, MI. 10. Joint Program in Survey Methodology, University of Maryland, College Park, MD. 11. Department of Biostatistics, School of Public Health, University of Michigan, Ann Arbor, MI. 12. Survey Research Center, Institute for Social Research, University of Michigan, Ann Arbor, MI. 13. Vibrent Health, Fairfax, VA. 14. Department of Research and Health Promotion, San Ysidro Health, San Diego, CA. 15. National Institutes of Health, Office of the Director, Bethesda, MD. 16. Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL. 17. Scripps Whittier Diabetes Institute, Scripps Health, San Diego, CA. 18. Meyers Primary Care Institute, Worcester, MA. 19. Spinal Muscular Atrophy Foundation, New York, NY. 20. HCM Strategists, Washington, DC. 21. Division of Rheumatology, Allergy, and Immunology, Department of Medicine, Section of Clinical Sciences, Brigham and Women's Hospital, Boston, MA. 22. Center for Health Policy & Health Services Research, Henry Ford Health System, Detroit, MI. 23. Cardiology Section, Department of Medicine, Veterans Affairs Boston Healthcare System, Boston, MA. 24. Cardiovascular Medicine Division, Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, MA.
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.
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.
Authors: Carla J DeMuro; Sandra A Lewis; Dana B DiBenedetti; Mark A Price; Sheri E Fehnel Journal: Expert Rev Pharmacoecon Outcomes Res Date: 2012-04 Impact factor: 2.217
Authors: Roger A Alvarez; Elias Vasquez; Carla C Mayorga; Daniel J Feaster; Victoria B Mitrani Journal: West J Nurs Res Date: 2006-08 Impact factor: 1.967
Authors: Jean G Ford; Mollie W Howerton; Gabriel Y Lai; Tiffany L Gary; Shari Bolen; M Chris Gibbons; Jon Tilburt; Charles Baffi; Teerath Peter Tanpitukpongse; Renee F Wilson; Neil R Powe; Eric B Bass Journal: Cancer Date: 2008-01-15 Impact factor: 6.860
Authors: Paul A Harris; Robert Taylor; Robert Thielke; Jonathon Payne; Nathaniel Gonzalez; Jose G Conde Journal: J Biomed Inform Date: 2008-09-30 Impact factor: 6.317
Authors: David Cella; William Riley; Arthur Stone; Nan Rothrock; Bryce Reeve; Susan Yount; Dagmar Amtmann; Rita Bode; Daniel Buysse; Seung Choi; Karon Cook; Robert Devellis; Darren DeWalt; James F Fries; Richard Gershon; Elizabeth A Hahn; Jin-Shei Lai; Paul Pilkonis; Dennis Revicki; Matthias Rose; Kevin Weinfurt; Ron Hays Journal: J Clin Epidemiol Date: 2010-08-04 Impact factor: 6.437
Authors: J T Delaney; A H Ramirez; E Bowton; J M Pulley; M A Basford; J S Schildcrout; Y Shi; R Zink; M Oetjens; H Xu; J H Cleator; E Jahangir; M D Ritchie; D R Masys; D M Roden; D C Crawford; J C Denny Journal: Clin Pharmacol Ther Date: 2011-12-21 Impact factor: 6.875
Authors: Simon Mallal; Elizabeth Phillips; Giampiero Carosi; Jean-Michel Molina; Cassy Workman; Janez Tomazic; Eva Jägel-Guedes; Sorin Rugina; Oleg Kozyrev; Juan Flores Cid; Phillip Hay; David Nolan; Sara Hughes; Arlene Hughes; Susanna Ryan; Nicholas Fitch; Daren Thorborn; Alastair Benbow Journal: N Engl J Med Date: 2008-02-07 Impact factor: 91.245
Authors: Patricia C Fulkerson; Stephanie J Lussier; Casper G Bendixsen; Sharon M Castina; Tebeb Gebretsadik; Jessica S Marlin; Patty B Russell; Max A Seibold; Jamie L Everman; Camille M Moore; Brittney M Snyder; Kathy Thompson; George S Tregoning; Stephanie Wellford; Samuel J Arbes; Leonard B Bacharier; Agustin Calatroni; Carlos A Camargo; William D Dupont; Glenn T Furuta; Rebecca S Gruchalla; Ruchi S Gupta; Gurjit Khurana Hershey; Daniel J Jackson; Christine C Johnson; Meyer Kattan; Andrew H Liu; Liza Murrison; George T Oâ Connor; Wanda Phipatanakul; Katherine Rivera-Spoljaric; Marc E Rothenberg; Christine M Seroogy; Stephen J Teach; Edward M Zoratti; Alkis Togias; Tina V Hartert Journal: medRxiv Date: 2022-07-10
Authors: John J McDermott; Terrence C Lee; Alison X Chan; Gordon Y Ye; Bita Shahrvini; Bharanidharan Radha Saseendrakumar; Henry Ferreyra; Eric Nudleman; Sally L Baxter Journal: Ophthalmol Sci Date: 2021-12-20
Authors: Lina Sulieman; Robert M Cronin; Robert J Carroll; Karthik Natarajan; Kayla Marginean; Brandy Mapes; Dan Roden; Paul Harris; Andrea Ramirez Journal: J Am Med Inform Assoc Date: 2022-06-14 Impact factor: 7.942
Authors: Robert M Cronin; Alese E Halvorson; Cassie Springer; Xiaoke Feng; Lina Sulieman; Roxana Loperena-Cortes; Kelsey Mayo; Robert J Carroll; Qingxia Chen; Brian K Ahmedani; Jason Karnes; Bruce Korf; Christopher J O'Donnell; Jun Qian; Andrea H Ramirez Journal: J Am Med Inform Assoc Date: 2021-03-18 Impact factor: 4.497
Authors: Mikaela H Sullivan; Evan C Sommer; David Schlundt; Jennifer B Shinall; Kelly L Haws; Kemberlee R Bonnet; Laura E Burgess; Eli K Po'e; Shari L Barkin Journal: Child Obes Date: 2020-07-24 Impact factor: 2.992
Authors: Joshua C Denny; Joni L Rutter; David B Goldstein; Anthony Philippakis; Jordan W Smoller; Gwynne Jenkins; Eric Dishman Journal: N Engl J Med Date: 2019-08-15 Impact factor: 176.079
Authors: Brandy M Mapes; Christopher S Foster; Sheila V Kusnoor; Marcia I Epelbaum; Mona AuYoung; Gwynne Jenkins; Maria Lopez-Class; Dara Richardson-Heron; Ahmed Elmi; Karl Surkan; Robert M Cronin; Consuelo H Wilkins; Eliseo J Pérez-Stable; Eric Dishman; Joshua C Denny; Joni L Rutter Journal: PLoS One Date: 2020-07-01 Impact factor: 3.240
Authors: Loretta M Byrne; Sarah K Cook; Nan Kennedy; Michael Russell; Rebecca N Jerome; Jason Tan; Claudia Barajas; Consuelo H Wilkins; Paul A Harris Journal: J Clin Transl Sci Date: 2020-09-11