Three Wishes for Sickle Cell Disease: Results from a multi-stakeholder vision-casting project in Tennessee

Although sickle cell disease (SCD) is one of the most common genetic disorders in the US, disparities in research and funding persist. To better understand stakeholder priorities, we conducted a virtual vision-casting session utilizing a graphic recorder and content analysis. Stakeholders responded to the question: “If you had three magic wishes for SCD in TN, what would they be?”. Wishes for SCD centered around information and data, care and policy, and community. Better patient-centered information about treatments and modernization of data were high priorities. Stakeholders identified a need for heath equity, starting with lifetime continuity of care and access to curative treatment for all persons with SCD. Key points concerning the community included better patient inclusion in research, increased awareness, and greater public knowledge. SCD patients expressed a desire for honesty, transparency, compassion, and trust. Key areas to address in SCD include better data coordination, more influence on health policy, broader access to care and more community awareness, with the ultimate goal of improving the lives of persons with SCD. Using data to improve care and address health disparities will require researchers listening to stakeholders and understanding multiple perspectives to form unified goals.