Designing Digital Tools to Combat Vaccine Hesitancy in High-Risk US Populations

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Since the beginning of the pandemic, Dimagi has supported COVID-19 response within the United States, from city and county-level support to state-wide deployments. As the country moves to the next stage of the pandemic, Dimagi is working with Abt Associates and local partners to fight vaccine hesitancy in some of the most vulnerable populations.

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In many regions of the United States, overcoming vaccine hesitancy is the greatest public health challenge communities now face. 

From fears associated with an expedited approval process to uncertainties around side effects in chronic disease populations, and the increased prevalence of anti-vaccination sentiment, there’s a lot to overcome.

By this point, those who want and know how to receive the vaccine have mostly done so—a truly fantastic achievement. But this means there are nearly 40 million people left to vaccinate before we reach the US government administration’s target, many of whom are in underserved communities. If we don’t make up ground, we may not avoid a dangerous summer surge.

But what’s the best way to compel people to get vaccinated? And who really makes for an effective messenger?

Adding to the Agenda: Community-Based Organizations Take on COVID-19 Response

Social service agencies, nonprofit organizations, and formal and informal community groups have built long-standing relationships and expertise in the populations they serve. As such they have become highly-trusted voices in these communities.

Often staffed by members of the community, Community-Based Organizations (or CBOs) are natural ambassadors for important public health messaging. COVID-19 has been devastating for the communities across the United States, and many CBOs have had to shift focus from core services to promotion of testing, tracing, and now vaccine uptake.

Velvet Brown-Watts is the Chief Executive Officer of Supporters of Families with Sickle Cell Disease, a local CBO in Tulsa, OK. Sickle cell disease affects mostly Black and Hispanic populations in the United States is notoriously under-researched and under-cared for, inspiring a robust network of CBOs to step in and fill the gaps left by the traditional medical system. 

Since the rollout of the COVID-19 vaccine, Velvet and her team have worked tirelessly to educate about the risks and benefits of vaccination in their SCD population: 

“We did a town hall meeting right before the vaccine pod, our educational sessions. We did it that Friday, and  we did a webinar Tuesday. Between Wednesday and Thursday, we got people who called our CHW and signed up for vaccination. We have shifted our focus to outreach activities including one-on-one calls to talk about COVID-19 and answer questions. We call people for three days after their vaccines to see how they’re doing. 

Individuals with Sickle Cell disease face 6.2 times the risk for COVID-19 related mortality, so a robust network of CBOs has stepped in to fill the gaps left by the traditional medical system:

“Our community is not against vaccination, they just need more information. We tell our stories too. Everyone at the office is vaccinated. Everyone in my house is vaccinated, too. I call it family-herd immunity because we created an immunity around my son, who has sickle cell. The Dimagi technology has helped to put in the data. It also helps with information dissemination and education.” 

Equipping Sickle Cell CBOs with Digital Solutions

Over the past few months, Dimagi has been providing pro bono support to five Sickle Cell CBOs across the United States – including Sick Cells, Axis Advocacy, Sickle Cell Thalassemia Patient Network (SCTPN), Sickle Cell Disease Association of Illinois (SCDAI), SCDAA Philadelphia/Delaware Valley Chapter, and Supporters of Families with Sickle Cell Disease. Together, we’re supporting the creation and uptake of a digital solution geared towards promoting the COVID-19 immunization of families and patients with Sickle Cell disease.

To build this solution, Dimagi worked with our partner Abt Associates, building on a collaboration deploying a COVID-19 case investigation solution in the State of Colorado.  Together we designed the solution, following intensive interviews with CBOs to better understand their beneficiaries as well as their needs and barriers. 

Based on the findings in those interviews, Abt Associates created the initial messaging for the digital solution, informing clients about the safety and efficacy of the vaccine, correcting any misconceptions they might have, and providing them with the latest localized information about how they can make an appointment and get themselves vaccinated.

Now live with all five CBOs, the solution supports staff and volunteers in registering clients and tracking interactions around the vaccine. Responsive forms display informative content relevant to the specific fears or hesitations a client expresses. And although currently at a small scale, the program will generate the first and only dataset about COVID-19 vaccine uptake in the Sickle Cell community nationally.

A CBO from Philadelphia/Delaware Valley has found that the top reason why someone from the SCD community is unvaccinated is the concern about side effects and a lack of information. As the project continues, the CHWs and CBOs will work to mitigate these reasons for vaccine hesitancy and increase vaccination in the populations they serve.

Seeking to Support More Sickle Cell Organizations 

Despite ample rhetoric about the importance of equitable vaccine distribution, funding for community led vaccine education campaigns has been minimal. Sick Cells is actively seeking support to sustain and scale the program up to the 52 Sickle Cell CBOs operation nationally. 

While vaccine hesitancy remains a primary concern for now, Dimagi and SickCells also hope to tackle the equally significant problem of better Sickle Cell care and Sickle Cell data collection over the coming years. This would mean expanding the CommCare application to include workflows and data collection on Sickle Cell care, creating a first national dataset about this rare disease. There is growing momentum to improve care and awareness of Sickle Cell disease after several investigatory articles in the New York Times shed light on glaring gaps in care, misunderstanding and mistreatment related to the diseases. 

If you are interested in deploying a vaccine hesitancy solution in your community, please contact Dimagi’s Senior Director of Partnerships Lily Olson (lolson@dimagi.com).