Designing for impact: identifying stakeholder-driven interventions to support recovery after major cancer surgery.

Purpose: Complex bladder and colorectal cancer surgeries are associated with significant patient morbidity, yet few resources exist to prepare patients for the high levels of distress and complications they may experience. After ethnographic research to identify design challenges, we held a user-centered design (UCD) workshop to begin to develop patient- and caregiver-centered interventions to support preparation for and recovery after complex cancer surgery.

Methods: Concepts that emerged from brainstorming sessions were visually represented on storyboards and rated. Highly scored concepts were further developed in break-out prototyping sessions and then presented to the entire group for review in person and during subsequent webinars. We collected workshop products (worksheets, prototypes, and recordings) for analysis to identify opportunities for intervention. The workshop, held in late 2014, was attended by three colorectal/oncologic surgeons, three urologic surgeons, five ostomy nurses, one quality improvement leader, three patients, one caregiver, and three experienced UCD facilitators.

Results: Three opportunity areas were identified: (1) enhanced patient education including tele-health and multi-media tools (available at hospitals/clinics or online in any setting), (2) personalized discharge assessment and care planning, and (3) integrated symptom monitoring and educational interventions. Stakeholders reached consensus that enhanced patient education was the most important direction for subsequent intervention development.

Conclusions: We engaged diverse stakeholders in a participatory, UCD process and concluded that research and practice improvement should prioritize the development of educational interventions in the pre-operative period to set the groundwork for improving appropriate self-care during recovery from major colorectal and bladder cancer surgeries.