The Healthcare Worker Exposure Response and Outcomes (HERO) Registry collects information about pandemic-related risk factors, perspectives, and challenges experienced by healthcare workers (HCWs) and those who support them. Since it launched in April 2020, over 55,000 people have joined the HERO Registry.
Registry participants come from different backgrounds, including HCWs, their families and members of their community. Most participants identify as White (75%), Black or African American (10%), Asian (6%), or Native Hawaiian or Other Pacific Islander (0.25%).
Why Does Diversity in Research Matter?
In the HERO Registry, as in all clinical research, it is important to include participants with diverse backgrounds. The Food and Drug Administration (FDA) has recently taken steps to increase participation of diverse people in clinical research programs.
Too few research participants from certain groups limits how results from research can be understood and generalized. In other words, ensuring meaningful representation makes the data more valuable for everyone.
For example, suppose all the people in a study are roughly the same age, live in the same city, and have similar levels of educational attainment. In this case, the study results may not apply to the broader population, as not everyone shares those characteristics.
Having a representative sample means that your smaller study group closely matches the larger group or population in which you are interested. This is especially important when studying what it is like for people to live and work during the COVID-19 pandemic.
Diversity in HERO
The HERO Registry team strives to build a community that reflects the diverse U.S. population and the different types of workers who support our healthcare system. HCWs and their communities have all been impacted by the COVID-19 pandemic. Physicians, nurses, emergency responders, technicians, food service and environmental services workers have both common experiences and unique stories to share.
Your experience matters because it helps us understand the impact of policies and programs, like mandatory vaccination and masking. Because this information may lead to new or revised policies, it is important to hear from everyone across racial/ethnic groups, regions, and professional roles.
To enhance enrollment of racially, ethnically, and professionally diverse participants, HERO Registry team members partnered with the Registry’s HCW Subcommittee to understand their experiences and to review and provide feedback on the Registry products including surveys, the website, materials, and social media channels. Subcommittee members also took an active role in writing blogs and filming videos to share their experiences and insights on the importance of the Registry as well as what we are learning. In addition, two Community Engagement Studios (CES) were held to review the Registry, its purpose, and future direction, with representatives from the community to improve current strategies, and lessons learned.
This evaluation was done in collaboration with the Meharry-Vanderbilt Alliance.
With Gratitude
The HERO Registry team is grateful for the valuable contributions from all Registry members. In April 2020, the HERO Registry launched with a mission to understand the COVID-19 pandemic’s evolving effects on healthcare workers and public health. Over time, the HERO Registry expanded to include family and community members who support healthcare workers. Registry members were offered opportunities to participate in COVID-19 research studies and surveys about timely topics. Your contribution to these efforts has provided crucial insights into the challenges workers face and the impacts of COVID-19 on their health, wellbeing, community, and family members.
Enrollment in the HERO Registry will close on September 15, 2022; collection of survey data will continue through September 30. Please take the opportunity to provide your final survey contributions through that date. Please note, this closure only impacts the HERO Registry. If you are enrolled in HERO-TOGETHER, please continue with your planned study activities.
On behalf of the HERO Research team, we truly appreciate your participation in the Registry during this historic time. Please be on the lookout for future communications about potential COVID-19 research opportunities and events where we will share what we heard from you and other members of the HERO Registry.
If you have any questions about your participation in the HERO Registry, please contact the study team at Hero-research@duke.edu.