Storytelling approach aims to increase diversity in COVID-19 immunology study participation
Credit: UMass Medical School
A new, $2 million grant from the NCI Serological Sciences Network for COVID-19 (SeroNet) is aimed at enhancing representation of Black and Hispanic people in SARS-CoV-2 immunology research through the use of storytelling–an approach in which community members become “video stars” and provide honest messages about the importance of being represented in COVID-19 research studies.
“The idea is to overcome barriers to research study participation for underrepresented populations through narrative storytelling,” said Ann Moormann, PhD, MPH, professor of medicine and co-principal investigator of the two-year grant. “We want to reach out to potential participants with information about research studies in a way that connects with them personally and motivates them to volunteer.”
Sarah Nicole Forrester, PhD, assistant professor of population & quantitative health sciences and co-principal investigator on the grant added, “The way we connect is through personal stories. That connection comes from hearing and seeing somebody that looks like you and has had the same experiences that you have had. Stories are more tangible, concrete and relatable; they transport you to that place. That’s why it’s a more effective way of engaging than just rote information.”
SeroNet is the nation’s largest coordinated effort to study the immune response to COVID-19 and aims to combat the pandemic by improving the ability to test for infection, especially among diverse populations, and speed the development of treatments and vaccines.
The NCI developed SeroNet in close collaboration with the National Institute of Allergy and Infectious Diseases and other parts of the National Institutes of Health and the Department of Health and Human Services. It involves 25 of the nation’s top biomedical research institutions, including UMass Medical School. The network was established using funds from an emergency appropriation of $306 million to NCI “to develop, validate, improve, and implement serological testing and associated technologies.” Lessons learned from SeroNet research can be applied immediately and may prove valuable to public health beyond the current pandemic.
One of the primary goals of the network is to ascertain the prevalence of SARS-CoV-2 infection across different racial, ethnic, socioeconomic and geographic groups. Of particular concern to clinical researchers is the lack of diversity found in clinical and serological studies being done on SARS-CoV-2. Many of these studies do not reflect the racial, ethnic and socioeconomic make-up of the population at large. This is particularly concerning for COVID-19 research because vulnerable populations are more likely to be infected and bear the disease burden that comes with infection.
“In scientific terms, this is important because COVID-19 is hitting these communities the worst,” said Dr. Forrester. “We know that inequality is exacerbated in health care. We need to include these communities in our data collection if we hope to generalize these treatments and vaccines to the population at large.”
There are many reasons some communities are underrepresented in COVID-19 research studies according to Forrester and Moormann: lack of trust, an inability to take time off work, and the cost and time involved in traveling to the study clinic. Potential participants frequently are not aware that research studies focused on improving community health are recruiting. Physicians should be trained to ask underrepresented communities to join clinical studies to increase the diversity of populations in research, explained Forrester.
In this study, researchers will work with community groups such as the Coalition for Healthy Greater Worcester and Worcester’s COVID-19 Health Equity Task Force to engage and listen to community members, identify barriers to research study participation and create themes and narratives that address their concerns. The first step will be to hold focus groups with various communities across Worcester.
Themes and narratives developed from these focus groups will be turned into stories voiced by people from the community. These oral and written narratives will be added to recruitment marketing efforts, likely in the form of videos of community members, for Dr. Moormann’s serological research on COVID-19, a longitudinal study that tests participant blood samples for antibodies and the presence of other immune cells such as T cells and natural killer cells, all of which play important and different roles in protecting the body from viral attacks. One of the chief questions Moormann hopes to answer is what type of immune memory responses are developed in people who have mild disease or no symptoms, especially children.
The hope is that potential participants who are exposed to the storytelling strategy will be more likely to enroll in the immunology research study than those who are only given traditional recruitment material. If successful, the methodology development at UMass Medical School can be adapted and replicated in other parts of the country to boost COVID-19 vaccine trial enrollment.
“The problem sometimes is, as researchers, we understand the scientific reasons why including diverse participation in clinical trials is important, but we lack the community level insight about the barriers that result in lower participation rates,” said Moormann. “Instead of simply telling people it’s important, we would like to engage people in an organic way as part of a community-based approach that listens and is respectful of the population we’re trying to reach.”