Germini F, Borg Debono V, Page D, Skinner MW, Zuk V, Kucher A, Sevestre M, Iorio A, on behalf of PROBE investigators. Development and testing of the online probe survey and the myPROBE app and integration with the Canadian bleeding disorder registry. Abstract P097. Haemophilia. 2020;26(S2):27-181. https://doi.org/10.1111/hae.13911
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. The Health Information Research Unit team at McMaster University andDesign2Code Inc. developed an online survey using Windows.net technologies and a mobile application for iOS and Android usingreact-native, in collaboration with the PROBE investigators. A user group evaluated the final product using the system usability scale (SUS) and an open feedback framework.
Results
The online survey was updated, a 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 wasreleased 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 oflongitudinal tracking repeated fillings of the questionnaire at different time points by the same patients (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. Seven hundred and twelve users completed the PROBE questionnaire, 165 of whom used their CBDR credentials. The PROBE online survey is currently available in 60+ countries and 75+ 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 the top 10 most used and popular apps across all categories (78).
Disclosure of Interest
F. Germini Grant/Research support from: The author’s institution received research supportfrom Roche to conduct this project., V. Borg Debono: None Declared, D. Page: None Declared, M. Skinner Grant/Research support from: Research support as the PROBE study principal investigator from Bayer, CSL, Novo Nordisk, Roche, Sanofi, Sobi and Takeda., V. Zuk: None Declared, A. Kucher: None Declared, M. Sevestre: None Declared, A. Iorio Grant/Research support from: Research support as PROBE study investigator from Bayer, CSL,Novo Nordisk, Roche, Sanofi, Sobi and Takeda.
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