1. User Support 

2.  Documentation 

3.  Resources for Survey Data Research

All of Us Registered Tier Survey Data Codebooks

The All of Us Registered Tier Survey Data Codebooks contains information for the All of Us Research Program survey materials available for research use as of Fall 2021. These materials include the Basics, Lifestyle, Overall Health, Personal Medical History, Family Health History, and Health Care Access Utilization surveys as well as several surveys released in the COVID-19 Participant Experience (COPE) series.

https://docs.google.com/spreadsheets/d/1USf2dZuwegZBnck_a1Z4uViai8h-_Z5UjT67zI_qfE8/edit#gid=1832128489

What Resources are Available for Researchers Interested in Survey Data?

Below is a comprehensive listing of resources available to researchers interested in learning about the survey development life cycle or using the resulting data. All participants complete a set of core surveys (The Basics, Overall Health, and Lifestyle). They may complete additional health surveys over time if they choose. Because these additional surveys are optional, resulting data may only be available for a subset of participants.

Survey Development

• The All of Us Data and Research Center’s Pilot Research team, in collaboration with the All of Us Participant Provided Information (PPI) Committee, published a formal research article detailing the All of Us survey development process including content creation and pilot evaluation:

Cronin et al. Development of the Initial Surveys for the All of Us Research Program. Epidemiology. 2019 Jul;30(4):597-608.

• Brief survey development background as well as all English and Spanish versions of all surveys are publicly accessible via the All of Us Research Hub’s Survey Explorer webpage. Survey source information and skip logic patterns are documented in each linked survey (see Basics example). Also available through this resource is detailed reference information for all source material used to create each of the survey questions. Source information includes the following for each source listed: name, question text, year, description, and URL (see Basics example).

 Survey Population

• The Research Hub Data Snapshots and Data Browser can be used to explore the broad demographic makeup of the All of Us cohort and/or compare the cohort’s demographic and health characteristics to other national study cohorts. Note about survey eligibility criteria: All enrolled participants are asked to complete the Basics, Overall Health, and Lifestyle surveys before or during a baseline in-person visit. Participants enrolled for at least 90 days and who have completed those first three surveys are currently invited to complete Health Care Access and Utilization, Family Health History, and Personal Medical History at their leisure.
  
  

 Data Analysis

• An overview of the All of Us privacy methodology and its impact on the research data is available within the User Support Hub. The User Support Hub provides background on which survey fields have been removed from the “Registered Tier” dataset, how dates have been transformed, and which demographic fields have been generalized. Also available is documentation that specifically describes the privacy methodology’s impact on representation of select survey elements (race/ethnicity, education, employment, sex at birth, gender identity, and sexual orientation).

• The How to Work with All of Us Survey Data's PPI How-to Guide is configured as a featured workspace that all incoming workbench users can immediately access. Survey researchers can copy this workspace as a template for their own work. Within the workspace is:

  • Detailed how-to guide that provides linked resources and instruction on extracting survey data from the All of Us repository and visualizing it in both graphs and tables

  • Tips and techniques for using SQL and background on the OMOP transformation process

  • Complete survey question/answer library and corresponding response frequencies for the registered tier dataset 

• In addition to the CDR data dictionary, individual OMOP data dictionaries outlining all questions/answers and their corresponding OMOP concept codes are available for each individual survey. All survey questions and answers are added to the All of Us specific PPI vocabulary and assigned a concept_id (Source Concept ID). When possible, the PPI concepts are then mapped to standard vocabularies such as LOINC, ICD9, or SNOMED and the associated “standard” concept_id. When mapping is not possible the PPI concept_id serves as both the source and standard. Survey questions and answers are stored in the OMOP Observation table and can be searched and analyzed via either the standard or source vocabulary concept_id.

Rationale for Selection and Creation of these Resources: All of Us surveys are developed, deployed, and statistically assessed under the guidance of research faculty with expertise in survey development, health psychology, bioinformatics, and statistical analysis. These same faculty provide guidance on the creation of materials that are needed by researchers interested in analyzing the resulting data. The All of Us survey deployment process is not based on defined sampling criteria. Because of this, survey documentation such as weighting or variance estimation guidelines that are sometimes available for other survey projects are not applicable for All of Us. In addition, the current library of surveys mainly consists of questions based on categorical responses rather than constructs or scales in which survey “validity” can be assessed. Based on the categorical nature of the program’s survey data, the survey documents, source information and survey codebook/frequency distribution guide are the essential elements needed for researchers interested in working with the All of Us survey data and determining the reliability of their analyses.