JMIR Publications

ABSTRACT

Background:

The systematic collection of Patient Reported Outcome (PRO) data is uncommon outside of clinical trials but promises great utility in the management of chronic illness. Qualitative research and gamification methodologies have an important role to play in the development of ehealth software to ensure that it is fit for purpose, and ensure its longevity in quality, patient-centered care. Our aim was to design and test a multimedia software platform that could be used to increase focus on health-related quality of life (HRQL) issues in HIV-management.

Objective:

We aimed to develop a digital platform to facilitate the use of PROs in the context of chronic HIV infection by setting the following objectives: (1) Design a web-accessible software platform compatible with smartphone, tablet, desk/laptop screens; (2) Assess comprehension of the platform, and perceived benefits; (3) Assess the usability of designed product; and (4) conduct a pilot study using PRO instruments integrated into the platform. We were an interdisciplinary Australian/French team with medical, psychology, IT and digital communications expertise; and the study was conducted in both countries with the team holding regular teleconferences over the course of the study.

Methods:

Seventy-nine patients and 32 doctors in France and Australia contributed to the design of the software by a multidisciplinary team based in the two countries. We used agile development principles, User-Centred Design, and qualitative research methods to develop and pilot the software platform. Following extensive consultation, using a prototype application to determine acceptability of the software, we piloted the final version with 41 Australian and 19 French residents using two validated electronic questionnaires, the DASS-21 inventory and a PRO instrument, the PRO-QOL HIV.

Results:

Testing of the prototype demonstrated that patients wanted an application that was intuitive and without excessive instruction so it felt effortless to use. It should be secure and able to be used discreetly. Clinicians wanted the PRO data synthesized, presented clearly and succinctly, and be actionable. Safety concerns for patients and clinicians included confidentiality of patient information, and the potential for breakdown in communication if insufficient user training was not provided. The final product piloted with patients, showed that most found the application easy to use, and comprehend. The useability testing survey administered found older Australians older had reduced scores for understanding the visual interface (p=0.004) and finding the ‘buttons’ organised, p=0.02. At least three-quarters of respondents were concerned with confidentiality, and this result was more prevalent in participants with higher anxiety and stress scores, as measured by the DASS inventory (p=0.007 and p=0.01 respectively). But these observations were not seen in the 15 French patients who completed the same questionnaire.

Conclusions:

Digital applications in health are becoming increasingly common but they should be safe and fit for purpose. Our software was developed following intense engagement with potential users in two countries. The next stage is to conduct a randomized controlled trial to determine if patients experience increased satisfaction with care; and doctors perceive they deliver better clinical care, and without an efficiency impost.