Co-creation phases in integrating top-down and bottom-up requirements: developing a self-compassion app with cancer patients

A cancer diagnosis often involves profound psychological distress, while very few patients seek psychosocial care. Self-compassion is a resource that enables relating to experienced difficulties with kindness and wise, caring action. From previous research we know that compassion-based interventions can be effective in helping patients to cope with long-term physical conditions. However, these interventions are minimally offered in self-help and/or mobile format. Since the uptake of existing psychosocial interventions is low, this project set out to develop a low-threshold self-compassion selfhelp intervention using mobile technology. The intervention needed to be based on theoretical evidence on compassion-based interventions to be able to offer their benefits. At the same time, the intervention needed to be aligned with the needs, wishes and experiences of patients to be of use to them, particularly during the chaotic time that follows after a cancer diagnosis. Therefore, design requirements include both theoretical evidence (top-down requirements) and user experiences, wishes and needs (bottom-up requirements). To enable integration of these requirements, five co-creation phases based on workshops with patients and oncology nurses were conducted, each with concrete co-design exercises. The first phase, “exploration of challenges” focused on exploring bottom-up requirements. This phase searched input on the most important targets for the intervention according to participants and on specific topics to be addressed within intervention content. The second phase, “defining content and values” focused on user recognition, appreciation, and suggestions for alterations of top-down content, and how top-down content could be adapted to the needs and vocabulary of end-users. This phase yielded information on which topics and exercises were appealing to the participants. The third phase, “concept design and features” focused on which bottom-up features are put forward by participants, and how they experience features derived from top-down requirements. This phase showed which design characteristics and features were most important for users (e.g. simple motivational elements but not too much gamification) and how top-down features would fit their needs (e.g. using push notifications, but letting the user choose the frequency). The fourth phase, “implementation” of the intervention, explored how participants would receive, offer and tell others about the app. This input enabled us to determine the times and ways in which to introduce the app to patients and the role of oncology nurses. The fifth and last phase, “structure and integration” explicitly focused on the integration of bottom-up and top-down requirements by evaluating iterative cycles of prototypes (participants’ mock-ups, researchers’ mock-ups and designer prototypes). Valuable lessons from both the top-down input and bottom-up input were presented, after which similarities and differences between them were discussed. During the fourth and fifth phase, possibilities and constraints from the software developer were also included as practical requirements. During the presentation, concrete co-design exercises and methods of each phase will be illustrated, along with lessons learned. The five phases, methods and lessons from this co-creation process can be valuable for future intervention researchers/designers who aim to include end-users and stakeholders in the development, while also basing the intervention on existing theory and evidence