Designing a Personalized Support Tool for Patients facing Bone Marrow Transplant

It is crucial for patients facing complex medical treatment to understand possible treatment outcomes, but this is difficult to achieve in practice due to the nature of stressful situations. This study explores how Bone Marrow Transplant (BMT) patients and providers perceive graphical representations of outcome-related information as a first step toward developing a secure patient portal to support the information needs of patients facing BMT. To inform system design, we conducted interviews with 10 veteran BMT patients and a focus group with 7 providers about our prototypes. We found that patients perceived the proposed tool as sense-making support to better comprehend and prepare for the complexities and emotional challenges relating to treatment rather than decision support, whereas providers attended to the tool's functionality in supporting decision-making. Findings revealed insights for personalized sense-making support regarding representations of numeric data and the navigation of experience-videos of veteran patients describing outcomes. Drawing on these, we discuss implications and suggest directions for future work.