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 (ICPSR 39153)
Version Date: Dec 3, 2024 View help for published
Principal Investigator(s): View help for Principal Investigator(s)
Emily O'Brien, Duke University;
Adrian F. Hernandez, Duke University
https://doi.org/10.3886/ICPSR39153.v1
Version V1
Summary View help for Summary
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.
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Funding View help for Funding
Subject Terms View help for Subject Terms
Geographic Coverage View help for Geographic Coverage
Smallest Geographic Unit View help for Smallest Geographic Unit
Census division
Restrictions View help for Restrictions
Access to these data is restricted. Users interested in obtaining these data must complete a Restricted Data Use Agreement, specify the reason for the request, and obtain IRB approval or notice of exemption for their research.
Distributor(s) View help for Distributor(s)
Time Period(s) View help for Time Period(s)
Date of Collection View help for Date of Collection
Data Collection Notes View help for Data Collection Notes
- For 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.
Study Purpose View help for Study Purpose
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
Study Design View help for Study Design
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.
Sample View help for Sample
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.
Time Method View help for Time Method
Universe View help for Universe
United States-based healthcare workers employed during the COVID-19 pandemic, and family and community members of these healthcare workers.
Unit(s) of Observation View help for Unit(s) of Observation
Data Type(s) View help for Data Type(s)
Mode of Data Collection View help for Mode of Data Collection
Description of Variables View help for Description of Variables
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
Presence of Common Scales View help for 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
Original Release Date View help for Original Release Date
2024-12-03
Version History View help for Version History
2024-12-03 ICPSR data undergo a confidentiality review and are altered when necessary to limit the risk of disclosure. ICPSR also routinely creates ready-to-go data files along with setups in the major statistical software formats as well as standard codebooks to accompany the data. In addition to these procedures, ICPSR performed the following processing steps for this data collection:
- Checked for undocumented or out-of-range codes.
Notes
The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.
One or more files in this data collection have special restrictions. Restricted data files are not available for direct download from the website; click on the Restricted Data button to learn more.
This study is maintained and distributed by the Patient-Centered Outcomes Data Repository (PCODR). PCODR is the official data repository of the Patient-Centered Outcomes Research Initiative (PCORI).