Using Experience-Based Design to Improve the Care Experience for Patients With Pancreatic Cancer

Purpose Despite the importance of the patient care experience to quality and outcome, the literature detailing the care experience in patients with pancreatic cancer is limited. Methods To elicit the experience of patients with pancreatic cancer for care redesign, we deployed experience-based design, an emerging methodology based on identification of events of high emotional content, known as touch points, to delineate qualitatively what matters most to patients and families. We defined touch points through direct observations, interviews, and a focus group. We then used experience questionnaires to measure emotional content and develop an experience map to graphically display the fluctuating emotional journey through the care processes. Study subjects were patients with pancreatic cancer who were cared for at Virginia Mason Medical Center, family caregivers, and staff. Redesign was initiated through an all-day improvement event in September 2013. Results During 2013 and 2014, we cared for 485 new patients with pancreatic cancer, the majority of whom had local disease at diagnosis. The response rate for the experience questionnaire was 23% (117 of 500 questionnaires distributed). The experience-based design results were often contrary to staff preconceptions of the care experience for patients with pancreatic cancer, and contributed to redesign in three key areas: understanding and documenting patient goals and values, providing better resources for caregivers/families, and improving care coordination and support services. Conclusion Experience-based design enabled us to understand the care experience and associated emotional content for patients with pancreatic cancer and their caregivers. This knowledge then supported care redesign targeted at areas of high negative emotional content.