A Patient-Facing Mobile App for Biobank Research Transparency and Engagement: Participatory Design (Preprint)

Abstract

Patient-derived biospecimens are invaluable tools in biomedical research. Currently, there are no mechanisms for patients to follow along and learn about the uses of their donated samples. Incorporating patients as stakeholders and meaningfully engaging them in biomedical research first requires transparency of research activities.

Here we describe the process and results of using participatory design methods to build a mobile application in which breast cancer patients could learn about their biospecimens collected for research, the status of their use in research protocols, and about the breast disease biobank collection. This decentralized biobanking application (“de-bi”) provided patient-friendly interfaces overlaying institutional biobank databases.

This research occurred in two phases. In Phase 1, we designed app screens containing different information that patients could learn about ongoing research involving their samples. Embedding these screen designs in a survey, we sought to gauge patients’ interests in receiving information about research or about their biospecimens. We engaged some survey respondents in short interviews to discern their views on the importance of having this information and their opinions on its presentation and design. We held a design workshop in which participants gave feedback on the screens and suggested improvements. For Phase 2, we then refined the user interfaces developed a functional app prototype. As we developed the app, we consulted institutional stakeholders to enhance compatibility with regulations and local data architectures. We then presented the app at a second workshop, where participants shared thoughts on usability and design of the app. In this phase we also conducted cognitive walkthroughs with individual participants to measure their success in using the app and to gain in-depth feedback on its functionality.

Survey and interview participants were interested in learning the status of their donated biospecimens (47%), the outcomes of research done on their specimens (30%), and in connecting with other patients similar to them. A design workshop assessing initial app screens revealed confusion in language and data presentation, though participants wanted to learn about their samples and expressed interest in using an app to do so. A second design workshop and cognitive walkthroughs assessed a functioning mobile app prototype integrated with institutional biobank data. These activities revealed further interest in the ability to track and learn about donated biospecimens. Half of participants struggled with the onboarding process. These results informed updates to the app design and functionality.

Designing a patient-facing mobile app that displays information about biobanked specimens can facilitate greater transparency and engagement in biomedical research. Co-designing the app with patient stakeholders confirmed interest in learning about biospecimens and related research, improved presentation of data, and ensured usability of the app in preparation for a pilot study.