Fantastic Perspectives and Where to Find Them: Involving Patients and Citizens in Digital Health Research

Background: Digital contact tracing and exposure notification apps have quickly emerged as a potential solution to achieve timely and effective contact tracing for the SARS-CoV-2 virus. However, their actual uptake remains limited, and citizens, including patients, are rarely consulted and included in the design and implementation process. However, their contribution could be determinant in the success of such apps. The DIGICIT (DIGITal CITizenship) project relied on patient and citizen partnership in research to assess public perspectives on these apps. Objectives: This article has three objectives: (1) describe the methodological process to co-construct a questionnaire and interpret the survey results with patients and citizens, (2) assess their experiences regarding this methodology, and (3) propose best practices for their involvement in digital health research. Methods: : The DIGICIT project was developed in four steps : ( 1) creation of the advisory committee composed of patients and citizens, (2) co-construction of a questionnaire, (3) interpretation of survey results, and (4) assessment of the experience of committee participants. Results: : Of the 25 applications received, 12 people met our diversity criteria and were included in the advisory committee. 84 survey questions were generated in the first co-construction meeting and were cut down to 36 in the final version. Participants made more than 20 recommendations when interpreting survey results and suggested carrying out focus groups with marginalized populations to increase representativity. They appreciated their inclusion early in the research process, being listened to and respected, the collective intelligence, and the method used for integrating their suggestions. They suggested that the study objectives and roles be better defined, that more time in the brainstorming sessions be allowed, and that discussion outside of meetings be encouraged. Conclusion: Having patients and citizens actively participating in this research constitutes the main methodological strength. They helped reorient the project by adding focus groups to the research protocol. Clear communication of the project objectives, good organization in meetings, and continuous evaluation from participants allow best practices to be achieved for patients' and citizens' involvement in digital health research. Co-construction in research generates critical study design ideas through collective intelligence. This methodology can be used in various clinical contexts and different healthcare settings.