Challenge

As of June 2022, there was limited knowledge about the sickle cell disease (SCD) population in Wisconsin. There were no certain data highlighting the total number of SCD Warriors, where they live, and where they receive comprehensive care in Wisconsin. Lack of data has restricted the amount of SCD-specific initiatives including but not limited to resources, healthcare access and legislative changes. Data from the Sickle Cell Data Collection Program in Wisconsin (SCDC-WI) estimates around 1,400 individuals living with SCD in the state. To increase public awareness and understanding of the SCD population in the state, Wisconsin-specific data must be shared with residents in a simple, yet informative manner through various channels of communication.

Approach

SCDC-WI has created and shared 3 state specific infographics to raise awareness about SCD, educate the public, and engage the local community. These data can help identify local resources, and potentially inform advocacy and policy efforts in Wisconsin.  Challenges such as low socioeconomic status which encompass factors like income, education, housing, food insecurity, and healthcare deserts (areas with limited healthcare facilities), may influence access to care and resources. The first infographic provided audiences with a general overview of SCD with the number of people living with SCD, their age and region in the state. The second infographic detailed what newborn screening encompassed and where most SCD births occurred in Wisconsin. The third infographic provided a detailed map of where people living with SCD reside in Wisconsin, as well as visual data representations of the race of babies born with SCD and an age breakdown of individuals living with SCD.

Impacts

Since the dissemination of these infographics, they have garnered over 8,800 digital views increasing awareness of SCD and SCD-related data in Wisconsin; something that was not happening before 2022. The infographics have not only increased awareness of Wisconsin-specific data, but have allowed for collaboration with medical institutions across the state to further increase reach and visibility. Additionally, poster versions of the infographics were also displayed at public facing events like the annual Sickle Cell Walk/Run during the month of September, further the impact offline and creating a well-informed public that can advocate for those living with SCD.

“It is important to understand the number of individuals living with SCD in Wisconsin and, state-specific data and resources are crucial, especially for warriors and parents of kids with SCD, to be able to operate in a factual and educational space. Infographics are a starting point.” – Members of SCDC-WI Community Advisory Board