HERO (Healthcare Workers Exposure Response and Outcomes) is a program coordinated by the Duke Clinical Research Institute and funded by the Patient-Centered Outcome Research Institute (PCORI) to understand pandemic-related risk factors, perspectives, and challenges experienced by healthcare workers and the larger community.
The HERO Registry is a virtual community of adult healthcare workers and their surrounding families and community members in the United States, offering them an opportunity to share their COVID-related experiences, which may serve as a starting point for research studies. Over 55,000 people who work in healthcare or know healthcare workers, including family and community members, have shared information as part of the HERO Registry on what it is like to work and live during the COVID-19 pandemic.
Despite the registry's success in recruiting over 55 thousand participants, those enrolled are disproportionately White, Non-Hispanic, and female. Also, certain health professions and healthcare worker roles, such as supporting roles, have little to no representation. The lack of participant diversity will affect research studies because participants should reflect the healthcare community's diversity, culture, conditions, race, ethnicity, gender, age, role, etc. Lack of diversity has ethical and research consequences, such as limiting our ability to use the study results to benefit some populations. The Meharry-Vanderbilt Alliance (MVA) are experts in clinical and community-engaged collaboration, education, research, and health equity.
The MVA team (Dr. Freneka Minter and Jack Wong, MPH), under the direction of Dr. Karen Winkfield, led a Diversity Enhancement Initiative which assessed strengths and gaps in the registry's digital presence and the promotional toolkit using community engagement methods and compiled best practices and recommendations for implementation. The community engagement methods included virtual Community Engagement Studios (CES) with diverse members of healthcare workers serving in supporting roles and Semi-Structured Interviews with Healthcare Worker (HCW) Subcommittee members.
CES allows researchers to get community insight or gain valuable information from the target population to enhance the research. In CES, the community or target population serves as experts. At the beginning of the CES, the researcher gives a brief presentation about the research project and poses specific questions to the community experts. A neutral facilitator from the Vanderbilt Institute of Clinical and Translational Research (VICTR) Community Engagement (CE) team guides the discussion to foster honest and constructive feedback.
To prepare for a successful CES, the researcher provides items discussed to community experts to review before. Two studios were convened at a time convenient to the community experts to capture initial thoughts, general thoughts, what it means to them, what is good about it, and what can be improved or done differently regarding imagery and language. The community experts, consisting of diverse hourly health care workers primarily in support roles, including housekeeping, CNAs, transport, medical assistants, etc., were compensated for their participation to optimize community participation.
The VICTR CE team provided the MVA with a full summary and community experts' feedback and recommendations. Some of the recommendations included:
- Diverse imagery and video representation
- More frequent, dynamic social media posts
- Collaboration with major entities to promote the Registry
- Engagement of existing HERO participants as Registry ambassadors
- Increase website/social media traffic by developing a mechanism for HERO participants/HCWs to connect
Semi-structured interviews were conducted with each of the HCW subcommittee members to get their input regarding their knowledge of the registry, lessons learned, and recommendations to foster diverse recruitment. An MVA team member interviewed nine subcommittee members, and their responses were compiled into a short report. Overall, the subcommittee members saw value in the registry but felt more could be done. They also expressed that it is essential to voice concerns shared by others in their profession or with their same racial/ethnic identity. Subcommittee members also expressed certainty that their close contacts have joined the HERO Registry, but they are unsure of the effectiveness of their broader recruitment efforts. Regarding recruitment strategies targeting new, diverse HERO Registry participants, they recommended clear, tailored messaging about the value of participation beyond research. While the platform establishes a connection to other HCWs, subcommittee members feel it can do more to generate broad community support and amplify HCW voices on issues beyond COVID-19.
Since implementing community-engaged methods, some of the changes made were a digital refresh of the website. These website changes include diverse imagery, including visible-facing FAQs for HERO Registry participants to answer questions about the registry, video testimony from a HERO Registry member on the importance of the program, and quotes on quotes on what it's like to be a Registry member. Also, the HERO communications team have been posting targeted messaging to those in supporting health care roles and diverse imagery on their social media posts. The work was recently highlighted on the HERO Research Team’s blog at: https://heroesresearch.org/hero-registry-diverse-representation-matters/