DOI: 10.3886/icpsr39153.v1
title: HERO Registry: Creating and Using a Community Registry to Understand the Experiences of Healthcare Workers and Their Communities during COVID-19, United States, 2020-2022
title: Version 1

description: To study the impact of COVID-19 pandemic on frontline healthcare workers in the United States over time, the Healthcare Worker Exposure Response and Outcomes (HERO) Registry was created in 2020 to form a virtual research community of healthcare workers (and later, their family members and community members). The registry was intended for healthcare workers interested in completing research studies related to the COVID-19 pandemic and its impacts on their lives. Observational data were collected at various timepoints between April 2020 and September 2022 via web-based questionnaires available on the HERO Registry online portal.
This collection contains 39 sets of data from over 50,000 HERO Registry members. Datasets represent separate surveys with distinct survey designs and sampling criteria. Surveys focused on health history, workplace experiences, COVID-19 exposure, social support, mental health, and the respondents' willingness to remain in or leave the healthcare field. Datasets 24 through 39 represent "hot topics" such as vaccines, vaccine willingness and uptake, childcare and school arrangements, and staffing shortages. Datasets for registry administration, respondent demographics, and survey eligibility criteria are also included.
description: This project had the following objectives:

Create a virtual community of U.S. adult healthcare workers, and family and community members around them
Identify healthcare workers and family/community members who are interested in engaging in research studies related to COVID-19
Create a dataset of health-related measurements, risk factors, and outcomes for future analysis
description: The research team worked with 34 sites participating in PCORnet to help recruit adult (18+ years old) healthcare workers to join the Healthcare Worker Exposure Response and Outcomes (HERO) Registry. If interested, participants created a registry profile by providing contact information, demographic information, employment status, medical history (including COVID-19 risk factors), and interest and/or eligibility for participating in future studies.
Based on eligibility criteria, participants were contacted for individual studies via their contact mode preference (email, phone call, or text message). Potential respondents were asked to complete questionnaires related to health status and sense of well-being. Survey participation was optional for all registry members. Please refer to the HERO Registry projects and publications for individual study design, methodology, and sampling.
description: Registry members answered the following items regardless of survey participation:

Demographic variables: age, gender, race, ethnicity, number of household members, Census division, Census region, employment information (type of healthcare environment and unit/department worked in, healthcare role, industry/occupation if not in healthcare, number of hours worked)
Health history: current medications used, COVID-19 symptoms, any chronic health conditions, self-related health

Survey data are organized by theme:

Availability and use of protective personal equipment (PPE) at work, including factors influencing mask wearing
Mental health, including burnout, emotional distress, depression, post-traumatic stress disorder, and moral injury
Exposure to COVID-19: symptoms, test results, hospitalizations, and experiences with receiving COVID-19-related healthcare
Perceived social support
COVID-19 vaccine and booster uptake for self and (if applicable) children, including reasons for not receiving the vaccine
Workplace environment: level of staffing at workplace, factors influencing staffing shortages, trust in workplace to protect against COVID-19, availability of resources for emotional support
Contributing factors to leaving healthcare or changing field/role within healthcare
Impact of COVID-19 on childcare, finances, and school arrangements
description: Presence of Common Scales: 
European Quality of Life (EuroQol) 5 Dimension (EQ-5D)
Multidimensional Scale of Perceived Social Support (MSPSS)
Physician Worklife Study (burnout item)
Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health Form
PROMIS Emotional Distress-Depression Form
description: Healthcare workers were defined as individuals who, at the time of study, worked in a setting where people receive healthcare. The registry inclusion criteria expanded to include family and community members of healthcare workers in May 2021.
The registry included over 50,000 people from all 50 U.S. states and Puerto Rico. Of these, 75% of respondents were White, 10% were Black or African-American, 6% were Asian, 3% were multiracial, 1% were American Indian or Alaska Native, 3% responded as another racial group, and 3% preferred not to respond. 12% of respondents reported Hispanic ethnicity. 76% of respondents were women. 65% of registry members were healthcare workers, of which 29% were nurses.
description: Datasets: 
DS0: Study-Level Files
DS1: HERO Registry Demographics
DS2: HERO Registry Baseline Survey Questions
DS3: Registry Enrollment Survey
DS4: Overall Health
DS5: Personal Protective Equipment (PPE)
DS6: Issues and Daily Impact
DS7: Burnout
DS8: Emotional Distress
DS9: COVID-19 Testing and Vaccination
DS10: Health Outcomes
DS11: Vaccine Trial Interest
DS12: Social Support
DS13: Baseline Measures (Legacy Participants)
DS14: Preferences Survey
DS15: Workplace Environment
DS16: Employer Support
DS17: Continuing in Healthcare
DS18: Post-acute Sequelae of COVID-19 (PASC): COVID-19 Case Survey
DS19: Post-acute Sequelae of COVID-19 (PASC): Control Survey P1, Jan-Mar 2020
DS20: Post-acute Sequelae of COVID-19 (PASC): Control Survey P2, Apr-May 2020
DS21: Post-acute Sequelae of COVID-19 (PASC): Control Survey P3, Jun-Aug 2020
DS22: Post-acute Sequelae of COVID-19 (PASC): Control Survey P4, Sep-Nov 2020
DS23: Post-acute Sequelae of COVID-19 (PASC): Control Survey P5, Dec 2020-Feb 2021
DS24: Hot Topics: Changes in School or Childcare Schedule
DS25: Hot Topics: Financial Impact of COVID-19
DS26: Hot Topics: COVID-19 Vaccine Willingness
DS27: Hot Topics: Vaccine Access
DS28: Hot Topics: Moral Injury
DS29: Hot Topics: Leaving Healthcare, May 2021
DS30: Hot Topics: COVID-19 Vaccines in Children, Jun 2021
DS31: Hot Topics: Employer Vaccine Requirements
DS32: Hot Topics: Feelings of Anger
DS33: Hot Topics: Return to School
DS34: Hot Topics: Vaccines in Children, Nov 2021
DS35: Hot Topics: Leaving Healthcare Part 2, Dec 2021
DS36: Hot Topics: Vaccine Boosters
DS37: Hot Topics: Masks
DS38: Hot Topics: COVID-19 Related Stress
DS39: Hot Topics: Staffing Shortages
description: United States-based healthcare workers employed during the COVID-19 pandemic, and family and community members of these healthcare workers. Smallest Geographic Unit: Census division
description: web-based surveyFor more information on the Healthcare Worker Exposure Response and Outcomes (HERO) Registry, including other projects and publications using HERO data and/or participants, please visit the HERO Registry website.