Measuring Social Determinants of Health in the All of Us Research Program: Technical Document

Background To advance precision medicine and improve population health, the All of Us Research Program aims to collect data, including a survey of social determinants of health (SDOH), from over 1 million participants. This report (1) outlines the process used to construct the All of Us social determinants of health (SDOH) survey and (2) presents the psychometric characteristics and scoring recommendations for SDOH survey measures. Methods A consensus process was used to select a definition of SDOH and conceptual frameworks to develop inclusion and exclusion criteria and priorities for construct consideration. Cognitive interviewing was used to provide an assessment of SDOH survey item performance in English and Spanish. Scales and scored items were constructed in alignment with validated literature. Item non-response was calculated, and Cronbach's alpha was used to analyze the psychometric properties of each scale, overall and by demographic characteristics. Multivariable logistic regression models were used to examine if demographic categories were associated with item non-response. Results Twenty-nine percent (N=117,783) of All of Us participants submitted SDOH survey data by June 30, 2022. Among those who provided any SDOH survey data, item non-response was infrequent, with most scales having less than 5% incalculable scores due to item non-response. Item non-response varied most along the lines of racial identity, educational attainment, and the language in which the survey was administered (Spanish or English). In our regression models, for most scales, patterns of missing data due to item non-response were seen by racial identity, educational attainment, income level, and age. Internal consistency reliability was greater than 0.80 for almost all scales, with variability by racial identity, educational attainment, and the language of survey administration. Conclusion The SDOH survey demonstrated good to excellent reliability across several measures of SDOHs and within multiple population groups that are underrepresented in biomedical research. Bias due to survey non-response and item non-response should be monitored and addressed as the survey is fielded more completely. Keywords: social determinants of health, psychometrics, social cohesion, loneliness, perceived discrimination, social support, neighborhood characteristics, precision medicine, health equity ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement The All of Us Research Program was funded by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA#: AOD 16037; Federally Qualified Health Centers: 75N98019F01202.; Data and Research Center: 1 OT2 OD35404; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 OT2 OD030043; Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The Institutional Review Board of the All of Us Research Program gave ethical approval for this work. The collection of data by the All of Us Research Program through intervention or interaction with participants is reviewed and approved by the All of Us Institutional Review Board. The All of Us Institutional Review Board determined that data made available to researchers via the program's Researcher Workbench is not readily identifiable, such that they secondary use of the data does not constitute research involving human subjects per definitions at 45 CFR 46.102, thus no additional IRB/EC review is required prior to use of the data (institutional requirements not withstanding) I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes The SDOH survey is publicly available online. The data can be found on the on-line workbench at the following link: https://www.researchallofus.org/data-tools/workbench/