People With Haemophilia as Data Coordinators: An Analysis of the Ethics and Feasibility of Self-Management With Personal Health Records

BACKGROUND: People with haemophilia perform various self-management tasks, supported by multiple health apps. Personal health records will enable individuals to access and add health information from different institutions in a single digital tool, providing an integrated overview of data. Later, individuals will also be able to share their data with health care providers and relatives. This creates a new role for users: Coordinator of data exchange.

OBJECTIVE: To analyze if and how personal health records contribute to self-management, with a particular emphasis on the role of coordinating data exchange.

METHODS: We applied various interpretations of self-management to the promises of personal health records to identify what goals it intends to achieve. We then assessed various skills and responsibilities that are required from users to work with personal health records. Last, we analyzed potential scenarios of the coordination of data exchange.

RESULTS: Personal health records promise to support both compliant self-management (i.e., managing care according to medical regimens) and concordant self-management (i.e., managing care according to personal values and goals). Which of these forms is promoted depends on the goal of data coordinating tasks. The chosen design of the data sharing feature may impact the usability and accessibility of personal health records for a wide group of users.

CONCLUSION: What form of self-management is promoted by personal health records needs to be more clearly defined. A participatory design strategy can ensure that the design of coordinating data exchange matches individuals' and health care providers' needs.