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Germini F, Borg Debono V, Page D, Zuk V, Kucher A, Cotoi C, Hobson N, Sevestre M, Skinner MW, Iorio A, The PROBE Investigators
User-Centered Development and Testing of the Online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) Survey and the myPROBE App and Integration With the Canadian Bleeding Disorder Registry: Mixed Methods Study
User-centered development and testing of the online PROBE survey and the myPROBE app and integration with the Canadian bleeding disorder registry.
Federico Germini;
Victoria Borg Debono;
David Page;
Victoria Zuk;
Alexandra Kucher;
Chris Cotoi;
Nicholas Hobson;
Michael Sevestre;
Mark W. Skinner;
Alfonso Iorio;
The PROBE Investigators
ABSTRACT
Introduction: Advances to support accessibility and robust data collection are important in a world of rapidly changing technology.
Methods:
To assess future development of software infrastructure of the Patient Reported Outcomes Burdens and Experiences (PROBE) project, we conducted a series of semi-structured interviews of relevant stakeholders, including PROBE investigators, people with hemophilia, and representatives of the sponsors. In collaboration with the PROBE investigators, the Health Information Research Unit at McMaster University and Design2Code Inc. developed an online survey using Microsoft.Net technologies and a mobile application for iOS and Android using react-native. A user group evaluated the final product using the system usability scale (SUS) and an open feedback framework.
Results:
The online survey was updated, the myPROBE app for mobile devices and a new application programming interface were developed. The app was tested and modified according to user feedback over multiple cycles. The final version of the app was released in July 2019. Seventeen users aged 23 to 67 years evaluated the final version of the app using the SUS. The median (first, third quartile) SUS score for the app was 85 (68, 88) out of 100. The newly introduced functionalities are: 1) the capability of longitudinal tracking repeated fillings of the questionnaire at different time points by the same participant (as opposed to anonymous completion); 2) linking of the questionnaire with hemophilia registries, starting with the Canadian Bleeding Disorders Registry (CBDR) as a proof of concept; 3) removing or adding questions as needed; 4) sending notifications to the users (e.g., reminders). A new secure database was built for securely storing personal information separately from the questionnaire data. 712 users completed the PROBE questionnaire, 165 of whom used their CBDR credentials. The PROBE online survey is currently available in 96 countries and 34 languages.
Discussion/Conclusion: The online survey was updated successfully, and the myPROBE app was developed. In the first months after the product’s release, the responses from testers and users have been largely positive. The median SUS compares well with previously published benchmark measures.
Citation
Please cite as:
Germini F, Borg Debono V, Page D, Zuk V, Kucher A, Cotoi C, Hobson N, Sevestre M, Skinner MW, Iorio A, The PROBE Investigators
User-Centered Development and Testing of the Online Patient-Reported Outcomes, Burdens, and Experiences (PROBE) Survey and the myPROBE App and Integration With the Canadian Bleeding Disorder Registry: Mixed Methods Study