Partners in Change: Using Patient Narratives for Service Co-Design

 

Objectives: To use a national video archive of patient experience narratives to develop, test and evaluate a rapid patient-centred quality improvement approach ('Accelerated Experience-based Co-design' or AEBCD).

The intervention was an adapted form of Experience-based Co-design (EBCD), a participatory action research approach in which patients and staff work together to redesign care. EBCD draws on transportation theory and narrative persuasion, using locally collected video patient narratives to help staff see through patients’ eyes. The accelerated intervention used national rather than local patient narratives (in lung cancer and intensive care). This shortened the timetable from 12 to 6 months and halved costs.

Evaluation: An ethnographic process evaluation was conducted, including observations, interviews, questionnaires, and cost and documentary analysis (including comparison with previous EBCD evaluations).

Results: A total of 96 staff members and 63 patients participated in the four AEBCD projects. The accelerated approach proved readily acceptable to staff and patients; using films of national rather than local narratives did not adversely affect staff engagement, and may have made the process less threatening. Local patients felt the national films generally reflected important themes although a minority felt they were more negative than their own experience. However, they served their purpose as a trigger to discussion, and the resulting quality improvements were similar to those in traditional EBCD projects. But the element of the intervention that has left both staff and patients feeling energised and empowered is the direct encounter with each other; the active partnership in co-design to achieve change; and the sense of tangible results. Staff feedback suggests EBCD can reconnect staff with fundamental values of care and compassion. Patients, too, report a different level of appreciation for staff, a belief that they will be listened to and that change is possible, and a renewed sense of trust in healthcare services.