Recommendations to enable and sustain personal health data access and sharing. An empirical approach.

The amount of personal health data (PHD) for each individual in Europe has radically increased due to the adoption of various technologies in everyday life, such as mobile phones and wearable sensors. PHD can include different types of health-related data, such as medical records, fitness tracking, transportation data, or behavioral data from social media. Health data are invaluable to support people in acquiring timely knowledge about their health and wellbeing. Access to PHD provides users of information systems with the opportunity to acquire self-knowledge and participate in decision making, while sharing PHD with other stakeholders can facilitate knowledge sharing. Despite this, recent reports support that, approximately only 1 in 5 of the European population have used their PHD through digital services.

Prior research about PHD access in information systems has mainly focused on the technical aspects of the topic. The doctoral dissertation uses a case study to answer a single research question: What recommendations are relevant for IS designers and developers to enable PHD access and sharing? Based on the findings of the study, five recommendations (R) were found to be relevant for designers and developers in connected health to foster the development of information systems. The dissertation proposes the consideration of the five recommendations during the design and development phases of IS:
R1) consider how users perceive health and PHD;
R2) consider what data types and formats foster PHD access;
R3) simplify medical terms, provide visualizations, and interfaces to nurture usability and personalization features, thus promoting the perceived value of PHD;
R4) consider age, education, occupation, and digitalization to encourage PHD sharing with stakeholders; and
R5) consider data privacy under the prism of data types, access control and trust, conditions of sharing, and the purpose of data processing.