Developing a data visualization tool for adults with disorders of consciousness: Qualitative analysis of user...

We report on the process of using a learning health systems (LHS) approach to design a data visualization dashboard to monitor the rehabilitation progress of patients with disorders of consciousness (DoC) after severe brain injury.

Our team conducted a qualitative study using informational interviews with key informants to understand informational needs and priorities for the dashboard from the perspectives of rehabilitation therapists, family members of patients with DoC, and third-party payors. We used a thematic survey approach to organize the findings with the following categories: (a) how the dashboard will be used; (b) content to be displayed; (c) organization and design of content; and (d) technical requirements. We used an iterative process to develop the dashboard, with multiple opportunities for stakeholder feedback.

Seven people participated in informational interviews (n = 2 rehabilitation therapists; n = 2 family members; n = 3 third-party payor representatives). The primary intended use of the dashboard is communication and facilitation of shared understanding across clinical teams, rehabilitation teams, and patients' families, and between payors and facilities. Desired content includes core metrics applied by the DoC program for diagnosis and monitoring. There is a high priority for making the display easily understandable and interpretable. Technical requirements include the ability to pull data for display from existing items in the electronic health record to minimize additional burden on therapists. User feedback on the design resulted in a streamlined main screen, with additional detail accessible by clicking into each assessment.

In the unique case of patients with DoC, who cannot speak for themselves, effective communication among rehabilitation clinicians, family members or care partners, and third-party payors is highly important for optimal care. The key benefit of using an LHS approach is positioning the team to proactively design the dashboard to account for the needs and preferences of different end users.