Experience‐based co‐design—Adapting the method for a researcher‐initiated study in a multi‐site setting

Background Experience‐based co‐design (EBCD) brings patients and staff together to co‐design services. It is normally conducted in one organization which initiates and implements the process. We used the traditional EBCD method with a number of adaptations as part of a larger research study in the British National Health Service. Methods The primary aim was to assess the feasibility and acceptability of conducting research‐initiated EBCD, to enhance intervention development prior to testing. As well as embedding the method in a research study, there were 3 further key adaptations: (a) working across primary and secondary care sectors, (b) working on multiple sites and (c) incorporating theory‐informed analysis. Results We recruited four sites (covering both primary and secondary care) and, on each site, conducted the initial traditional EBCD meetings, with separate staff and patient groups—followed by a single joint patient‐staff event, where four priority areas for co‐design were agreed. This event was driven by theory‐informed analysis, as well as the traditional trigger film of patient experiences. Each site worked on one priority area, and the four co‐design groups met over 2‐3 months to design prototype tools. A second joint event was held (not usually undertaken in single‐site EBCD) where they shared and compared outputs. The research team combined elements of these outputs to create an intervention, now being tested in a cluster randomized controlled trial. Conclusions EBCD can be successfully adapted for use across an entire patient pathway with multiple organizations and as part of a research process to identify an intervention for subsequent testing in a randomized trial. Our pragmatic approach used the patient experience to identify areas for improvement and co‐designed an intervention which directly reflected patient priorities.