Discussion and Conclusions
A robust and versatile software tool could be designed which met almost all of the design
objectives using an open-source content management system. This is a testament to the inherent flexibility
and modularity of the system. The overall development
took about 4 weeks with around 30% of the time being spent in theming
and around 40% of the time devoted to developing the translated
versions of the questionnaires.
At this stage, we have intentionally chosen to limit the patient-related
information that the site collects especially with respect to
identifying information. The system can be easily extended to collect
any additional information the user desires. Additional integration with
social sign-in and login modules can allow users to register and log in
using their social media accounts. Two-factor authentication systems can
be also implemented to improve security. Short messaging system (SMS)
based login systems can be integrated to allow OTP based login. From a user experience testing, logging in possibly not essential for patients. However, some form of user authentication is necessary in order to ensure that longitudinal evaluation of user responses is possible. This can be achieved through the use of an invitation-based system which sends invites to the patient's emails. However, this would mean that the site will have to maintain a record of a patient identifier like email or phone in the system.
The results of the initial usability testing are encouraging enough to
actually proceed with a full-fledged research plan for implementation of
the system at ground level. Key inputs from the initial round of user
testing revealed that most participants were able to access and fill the questionnaire in the expected time. As expected most participants found the audio voice-overs for the questions to be helpful. However, a more professional voice over should be employed when using for patients to convey empathy and emotional range. Additional media types like videos need to be explored.
The system offers an open-source alternative to resource-strapped health
care systems in the country to implement PROM collection and usage.
Questionnaire development, content development and site maintenance
activities can be done using the graphical user interface. The key
benefit of an e-PROM system is the ability to view patient results in
real-time during a clinical encounter. The results of the patient should
be ideally reviewed, discussed at the clinical encounter after the
patient fills the questionnaire and appropriate supportive care offered
where feasible. We plan to extend the health care worker interfaces for
viewing the results further and integrate more sophisticated graphing
and predictive modelling techniques in future iterations.
The system will be available for users from other centres across the country to deploy the system and
implement their own version as they require. We as a group would be very
happy to help and support implementation and usage. The system would be open to all interested users and we would freely provide a local copy for testing and usage without copyrighted questionnaires.
Quality of Life questionnaires from organizations like EORTC will require separate licensing agreements with the respective organizations before usage. However once the proof of licensing agreement is shown to us, we can export the form configuration easily to the user to minimize development time. The codebase of the system including the system configuration and the theme is available for reuse under a creative commons CC BY-NC license. We propose to test and extend this system further through a prospective study whereby this system will be presented to actual patients who are undergoing cancer therapy or presenting for their followup visits. The impact of this system on symptom discovery as well as the impact on patient-physician communication will be assessed in this study.
Acknowledgements
We would like to thank all the persons who had expressed their interest in participating in the user experience testing. The full list is available at
https://astu.pw/node/14. Additionally, we would like to thank the developers of the Drupal CMS and the contributed modules, whose contribution allowed us to develop this system with minimal coding.