Fantastic perspectives and where to find them: involving patients and citizens in digital health research

Plain English summary COVID Alert is a mobile application (app) that was developed created to help limit the spread of COVID-19 in Canada. Although promising, these apps have not been widely used by the population, in part due to limited citizen engagement in their design. The DIGICIT project (DIGITal CITizenship) was carried out in partnership with citizens, including patients, to gather public perspective in Quebec, Canada about the COVID Alert app. The purpose of this article is to describe our method of constructing a survey questionnaire with patients and citizens. We have created an advisory committee of 12 participants. Along with the research team, they created a 36-question survey. They also suggested doing focus groups to add data to the survey by reaching marginalized groups that are traditionally excluded from digital health research. We also wanted to know the experience of the participants being included in this study. We conducted interviews and did a small survey with them. They appreciated being included from the beginning of the research, being listened to, and being respected. They appreciated the creativity of the group and the brainstorming sessions. However, they would have liked the tasks to be clearer from the start. They also would have preferred to have more time in the brainstorming sessions to create the survey questions, and to have discussions outside of the meetings. The inclusion of patients and citizens is the main strength of this project. To improve their integration in health research, there needs to be good communication of project objectives. Also, meetings must be well organized, and participants must be able to evaluate their experience.