Engaging Patients in Heart Failure Management by Sharing Cardiac Device Data

An in-depth user-centered design study conducted to achieve validated design of a patient facing dashboard presenting real-time health data, interpretations and contextually relevant actions. Industry funded research sponsored by Biotronik. 

[2018]

Congestive heart failure (CHF) patients with cardiac resynchronization therapy (CRT) devices currently have no access to their own health data from remote monitoring (RM) and do not always adhere to RM. This is important as it has been shown that RM improves health outcomes. A user-centered design study was conducted to develop and test an interactive RM data dashboard with patients living with implanted cardiac devices for heart failure management.

Team

Ryan Ahmed, Romisa R. Ghahari, Tammy Toscos, Shauna Wagner, Carly Daley, Michael Mirro, MD (Parkview Research), Richard Holden (Indiana University)

Objective

Aim of this study was to build an interactive report that engages patients with their RM data on a hypothesis that having access to RM data will improve adherence as well as empower patients to seek clinical intervention before the onset of an adverse event.

Process

We applied an iterative design process to co-create an interactive patient-facing report working with CHF patients living with a CRT device. 

Focus Groups

Patients and their caregivers were in multiple focus group sessions to discuss care needs surrounding implanted cardiac devices for HF management along with their triggers for anxiety, preferences for information and gaps in health education.

Participatory Design

A group participatory design session was conducted with patients and their caregivers to develop the preliminary paper prototype of a patient-facing data dashboard containing preferred content, visualization, real time data feed from their implanted CRT device and supporting educational content.

Prototyping and Usability Testing

Outcome of the participatory design phase was used to mock up a digital dashboard interface for one-on-one task based usability testing sessions. Evaluation findings were used to validate concepts and informed areas of improvement addressed in the final interactive design to be used in a pilot trial.

Pilot Trial and Analytics

A small group of patients were recruited into a 6-month pilot study examining the impact of delivering this report through a dashboard in their patient portal. Dashboard view frequency, calls to the clinic, healthcare utilization and RM adherence were collected and analyzed. 

Interviews

Qualitative aspects of participant experience including usability and usefulness were also collected through interviews following the pilot trial.

Navigating dependencies: A functional dashboard could not be completed in time for the pilot trial. Alternate "Wizard of Oz" solution was adopted as an interactive PDF loaded in a browser window updated daily by a pre-configured Microsoft Office data connection between a spreadsheet report and PowerPoint design template.

Outcome of participatory design and materials used in the group activity.

Outcome

Sharing CRT device data with patients in a meaningful way achieved using user-centered design demonstrated potential for improved health outcome through timely intervention to avoid worsening HF as well as minimum impact on clinician burden.

How remote monitoring data is currently presented to clinicians only.
Concept of remote monitoring data presented to patients as an outcome of research.

One participant in the pilot phase followed recommended action provided only in the study, and potentially avoided a health emergency with timely clinical intervention.

Publications