A User-Centered UX Design Approach for Consenting Secondary Use of Patient Data

Research in healthcare and medicine largely depends on access to high quality patient data. Longitudinal interoperable electronic health records exchanging structured health data sets are essential resources for secondary use such as clinical research. As a tool for interacting with patients, web-based health portals are gaining traction in the market.

The goal of this paper is to present the results of an approach that applied current UX design principles and methods to develop a skinned wireframe prototype for data donation within a market-available patient portal. Preliminary evaluation results of the wireframe prototype are reported.

To iterate and ideate on the prototype the multidisciplinary User Centered Design (UCD) approach with the defined 4 phases has been applied. Preliminary user experience evaluation has been conducted with a set of test users applying the "think-aloud" method.

An interactive prototype of a data donation and consenting workflow as well as its ideation phases have been developed and integrated into a web-based portal. A preliminary user experience evaluation with 4 test subjects has been conducted highlighting the high degree acceptance based on the clarity of the presentation and the importance of the topic.

While the preliminary user experience evaluation gave valuable and responsive input for future design cycles and the perceptions of users on the research subject future work is required to have a larger, personas centered test audience and structure based on future iterations of the final, software developed prototype.