Digital solutions for providing patients access to hospital-held health information: what are the design issues that need to be addressed?

A patient and whānau centred healthcare system includes patients having easy access to their health records when and where they need it. Accessible digital solutions providing patients with access to their health information, including hospital-held healthcare records, will support patients and whānau to be active and informed participants in their health. A Northern Region proof-of-concept, providing patients with electronic access to their hospital-held health information, identified several challenges in the design of such "portals". The purpose of this paper is to present a discussion of these challenges, and to present a review of the literature on how other countries and health settings have managed them. The review has led to recommendations around how delegated access, auditing access, adding and correcting of information, the timing of test result availability, and retrospective records should be handled. However, more investigation is required into the challenges surrounding how various types of more sensitive information should be handled. There is still considerable work to be done on how to technically and operationally transform these "default design principles" into reality within the complexity of New Zealand hospitals' electronic health information systems.