To date, the All of Us Program has released two survey series specific to the COVID-19 pandemic:
- COVID-19 Participant Experience (COPE)
- Minute Survey on COVID-19 Vaccines
The All of Us Research Program COVID-19 Participant Experience (COPE) survey was meant to assess the impact of the COVID-19 pandemic on individuals' everyday lives and physical, mental, and emotional health. The survey was revised and re-released six times from May 2020 through February 2021 and included items from the COVID19 CDC Community Survey Bank, the Michigan Social Distancing Survey, the Coronavirus Pandemic Epidemiology (COPE) Consortium, the Impact of Event Scale (IES-R-6), the Optimism: Life Orientation Test, the UK Biobank Mental Health Questionnaire, the RAND MOS (Medical Outcomes Study) Social Support Survey, the Generalized Anxiety Disorder-7 (GAD-7), the Patient Health Questionnaire (PHQ-9), and the International Physical Activity Questionnaires (IPAQ).
The All of Us Research Program Minute Surveys on COVID-19 Vaccines were brief surveys designed to assess experiences related to COVID-19 vaccination dosing and perceptions. The surveys were available to participants to complete from June 2021 through March 2022 and include items from the Dutch Mexican Flu Study and items developed specifically for use within the All of Us Research Program.
COVID-19 Related Survey Versioning Changes
|COPE May 2020||Original release; included 173 items (104 main items and 69 follow-ups).|
|COPE June 2020||Second release; included the addition of COVID symptom items for a total of 170 items (104 main items and 66 follow-ups).|
|COPE July 2020||Third release; included minor wording changes, removal of a flu testing question, and the addition of a bereavement item sourced from the Nurses’ Health Study COVID-19 Supplement for a total of 174 items (106 main items and 68 follow-ups).|
|COPE November 2020||Fourth release; included addition of COVID and flu testing items and COVID vaccine perception items, combined COVID symptom and testing sections, and removed items for physical activity, general well-being, social support, stress, loneliness, substance use, resiliency, and discrimination. Additionally, anxiety, mood, and basic health items were reduced and blood type items were added for a total of 72 items (27 main items and 45 follow-ups).|
|COPE December 2020||Fifth release; no changes from November 2020 version.|
|COPE February 2021||Sixth and final release; included addition of COVID testing and COVID vaccine recipient items. COVID testing items were also removed for a total of 77 items (48 main items and 29 follow-ups).|
|Minute Summer 2021||Original release; included a total of 18 items (1 main item and 17 follow-ups).|
|Minute Fall 2021||Second release; no changes were made to the Fall Minute Survey; it is identical to the Summer Minute Survey.|
|Minute Winter 2021||Third release; included the addition of items about additional and booster doses of the vaccine for a total of 37 items (1 main item and 36 follow-ups).|
|Minute New Year 2022||Fourth and final release; no changes were made to the New Year Minute Survey; it is identical to the Winter Minute Survey.|
Scoring Considerations for the COVID-19 Related Survey Series
The COVID-19 Participant Experience survey series is composed of items from multiple sources and so can not be scored as a whole. The survey, however, does include several items from scales that can be scored alone including the Impact of Event Scale Revised PTSD Screening tool, the RAND MOS Social Support - Tangible Support Subscale, the Generalized Anxiety Disorder (GAD) 7, the Patient Health Questionnaire (PHQ) 9, the Cohen’s Perceived Stress Scale, the International Physical Activity Questionnaires (IPAQ), the UCLA Loneliness Scale, the Brief Resilient Coping Scale, and the AUDIT-C. In addition to the linked external resources, please see the How to Work with All of Us Survey Data featured workspace notebook for more information.
The Minute Survey on COVID-19 Vaccines contains categorical items that can not be scored.
The COVID-19 Participant Experience survey was available to all All of Us participants after completion of the Basics survey.
The Minute Survey on COVID-19 Vaccines was available to all All of Us participants after completion of the Basics survey. In addition, the survey was meant to capture vaccine dosing information on a continuous, rolling basis beginning with vaccine dosing data captured in the February COPE survey (e.g., if a participant reported receiving dose 1 of the COVID-19 vaccine in one instance of the series, they should not have been asked to report on dose 1 again). Ex. If a participant answered in the February COPE survey that they received dose 1 of the COVID-19 vaccine, but not dose 2, they would receive the Summer 2021 Minute survey, but only be asked about dose 2 and beyond. If the same participant indicated in the Summer 2021 Minute survey that they had not received dose 2, they would receive the Fall 2021 Minute survey and be asked about dose 2 again.
Note about known Minute survey data integrity issue: Due to a fielding error, a portion of participants responded to the following items more than once though they should have been fielded only one time. Ineligible responses for these items have been marked as invalid. These items are denoted with concept ID 2000000010 (AoUDRC_ResponseRemoval) and include a description of the response removed. Though observed instances of the issue have been invalidated, we still recommend that researchers review and clean their datasets to ensure other instances of skipped or missing Minute survey data are considered in preparation for analysis.
For more information about survey samples and releases, please see [Introduction to All of Us Survey Collection and Data Transformation Methods]
Survey Completion Rates
Because date fields collected via the COPE and Minute surveys are recorded as collected in the Registered Tier CDR, it is not possible for researchers to accurately calculate response rate denominators themselves when working with that dataset. As a result, please find calculated response rate denominators for each of the COVID-19 related surveys currently available to researchers below.
- COPE May 2020: 311,695
- COPE June 2020: 313,536
- COPE July 2020: 318,958
- COPE November 2020: 322,099
- COPE December 2020: 323,847
- COPE February 2021: 328,249
- Minute Survey Summer 2021: 292,883
- Minute Survey Fall 2021: 329,791
- Minute Survey Winter 2022: 331,322
Data Model & Privacy Protection Considerations
All survey codebook variables (e.g., source codes) are deposited into the OMOP Common Data Model’s observation table and stored as concepts in an All of Us specific “PPI” vocabulary. This vocabulary is both browsable and downloadable via Athena, the online OMOP repository - for a listing of concepts specific to the COVID-19 Participant Experience survey and Minute Survey on COVID-19 Vaccines, please see these Athena entries:
Select items from the COVID-19 related surveys have been either suppressed or generalized within the Registered and Controlled Tiers. Please see below for these specifics, which are also captured in the All of Us survey codebook and How All of Us Protects Participant Privacy.
Registered and Controlled Tier Privacy Considerations for the Minute Surveys on COVID-19 Vaccines
|Data Element||Registered Tier||Controlled Tier|
|Date of Vaccination (concept IDs: 596886, 596887, 765946, 765947, 765948, 765949, 765950, 765951, 765952, 765938, 765939, 765940, 765941, 765942, 765943, 765944, 765945)||Suppressed||As Collected|
|Other Vaccine Taken (Concept IDs: 905049, 905059, 766054, 766044, 766056, 766058, 766060, 766062, 766064, 766066, 766038, 766040, 766042, 766046, 766048, 766050, 766052)||Suppressed||Suppressed|
|Other Symptom Experienced (Concept IDs: 905050, 905060, 765990, 765980, 765992, 765994, 765996, 765998, 766000, 766002, 765974, 765976, 765978, 765982, 765984, 765986, 765988)||Suppressed||Suppressed|
|What factors might make you less likely to get the vaccine? Please select all that apply. (Concept IDs: 1310146, 905041, 766006)||Suppressed||Suppressed|
Registered and Controlled Tier Privacy Considerations for the COPE Surveys
|Data Element||Registered Tier||Controlled Tier|
|Free text fields (Concept IDs: 715726, 1310065, 1310054, 1310066, 596889, 1333234, 1310147, 715714, 1310146, 715725, 1310058, 702686, 715724)||Suppressed||Suppressed|
|Employment Status. What is your current employment status? Select all that apply. (Concept ID: 1332843)||Generalized||As Collected|
|Not including yourself, how many other people live at home with you? (Concept ID: 1333015)||Generalized||As Collected|
|Think of other people who live with you. How many are under the age of 18 years? (Concept ID: 1333023)||Generalized||As Collected|
|Approximate date of illness related to COVID-19 or flu-like symptoms (Concept ID: 715711)||Suppressed||As Collected|
|Are there other important symptoms you want to share with us? (Concept ID: 1310148)||Suppressed||As Collected|
|Was the test for COVID-19 positive? (Concept ID: 1333326)||Suppressed||As Collected|
|Were you tested for COVID-19 in the past month? (Concept ID: 1333327)||Suppressed||As Collected|
|Were you tested for influenza (flu) in the past month? (Concept ID: 1332742)||Suppressed||As Collected|
|How were you tested? Select all that apply. (Concept ID: 1333014)||Suppressed||As Collected|
|How many times have you been tested? (Concept ID: 1333118)||Suppressed||As Collected|
|Did you have difficulty with the following aspects of getting a test for COVID-19? Please select all that apply. (Concept ID: 1310145)||Suppressed||As Collected|
|What was your reason(s) for testing for COVID-19? Please select all that apply. (Concept ID: 1310144)||Suppressed||As Collected|
|Did you receive the COVID-19 vaccination? (Concept ID: 596884)||Suppressed||As Collected|
|Enter date of first vaccination. If you can't remember the exact date you received your vaccine, use your best guess. (Concept ID: 596886)||Suppressed||As Collected|
|Enter date of second vaccination. If you can't remember the exact date you received your vaccine, use your best guess. (Concept ID: 596887)||Suppressed||As Collected|
|What medical care did you receive? Please select all that apply. (Concept ID: 1333324)||Suppressed||As Collected|
|What breathing treatment did you receive? Please select all that apply . (Concept ID: 1333012)||Suppressed||As Collected|
|What type of household do you live in? (Concept ID: 1333016)||Suppressed||As Collected|
|You can choose not to answer any question at any time. This survey will take approximately 15 to 20 minutes to complete. Do you still want to take the survey? (Concept ID: 903632)||Suppressed||Suppressed|