Participatory methods in a digital setting: experiences from the co-creation of an eHealth tool for people with chronic obstructive pulmonary disease

BACKGROUND: Using participatory methods to engage end-users in the development and design of eHealth is important to understand and incorporate their needs and context. Within participatory research, recent social distancing practice has forced a transition to digital communication platforms, a setting that warrants deeper understanding. The aim of this study was to describe the experiences of, and evaluate a digital co-creation process for developing an eHealth tool for people with chronic obstructive pulmonary disease (COPD). METHODS: The co-creation was guided by Participatory appreciative action and reflection, where a convenience sample (n = 17), including persons with COPD, health care professionals, relatives and a patient organization representative participated in six digital workshops. User instructions, technical equipment, and skilled support were provided if necessary. Workshops centred around different topics, with pre-recorded films, digital lectures and home assignments to up-skill participants. Process validity, experiences and ownership in the co-creation process were evaluated by repeated respondent validation, member checking, questionnaires and by assessing attendance. Data was analysed quantitatively or qualitatively as appropriate. RESULTS: The co-creators were in general satisfied with the digital format of the workshops. Mean attendance and perceived engagement in workshops was high and the experience described as enjoyable. Engagement was facilitated by up-skilling activities and discussions in small groups. Few had used digital communication previously, and feelings ranging from excitement to concern were expressed initially. Technical issues, mainly audio related, were resolved with support. At completion, skills using equipment and digital platform surpassed expectations. Few disadvantages with the digital format were identified, and advantages included reduced travel, time efficiency and reduced infection risk. CONCLUSIONS: Experiences of digital co-creation were overwhelmingly positive, despite initial barriers related to computer naivety and use of digital equipment and platforms. The high level of satisfaction, engagement, attendance rates, and agreement between individual and group views suggests that a digital co-creation process is a feasible method. Several important success factors were identified, such as the provision of information and education on discussion topics in advance of workshops, as well as the smaller group discussions during workshops. The knowledge gained herein will be useful for future digital co-creation processes.