Canada deployed a digital exposure notification app (COVID Alert) as a strategy to support manual contact tracing. Our aims are to (1) assess the use, knowledge, and concerns of the COVID Alert app, (2) identify predictors of app downloads, and (3) develop strategies to promote social acceptability. A 36-item questionnaire was co-designed by 12 citizens and patients partnered with 16 academic researchers and was distributed in the province of Québec, Canada, from May 27 to 28 June 2021. Of 959 respondents, 43% had downloaded the app. Messaging from government sources constituted the largest influence on app download. Infrequent social contacts and perceived app inefficacy were the main reasons not to download the app. Cybersecurity, data confidentiality, loss of privacy, and geolocation were the most frequent concerns. Nearly half of the respondents inaccurately believed that the app used geolocation. Most respondents supported citizen involvement in app development. The identified predictors for app uptake included nine characteristics. In conclusion, this project highlights four key themes on how to promote the social acceptability of such tools: (1) improved communication and explanation of key app characteristics, (2) design features that incentivize adoption, (3) inclusive socio-technical features, and (4) upstream public partnership in development and deployment.
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. Nonetheless, their actual uptake remains limited. Citizens, including patients, are rarely consulted and included in the design and implementation process. Their contribution supports the acceptability of such apps, by providing upstream evidence on incentives and potential barriers that are most relevant to users. The DIGICIT (DIGITal CITizenship) project relied on patient and citizen partnership in research to better integrate public perspectives on these apps. In this paper, we present the co-construction process that led to the survey instrument used in the DIGICIT project and the interpretation of its results. This approach promotes public participation in research on contact tracing and exposure notification apps, as well as related digital health applications. 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 for participation in the advisory committee, we selected 12 people based on pre-established diversity criteria. Participants initially generated 84 survey questions in the first co-construction meeting, and eventually selected 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 enriched the study from start to finish, and recommended the addition of focus groups to seek the perspective of marginalized groups that are typically under-represented from digital health research. 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.
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.
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