Data Federation in the Era of Digital, Consumer-Centric Cares and Empowered Citizens

Abstract

Breast cancers, similar to any other types of cancers or diseases, need treatments and other actions that generate medical and patient data. As the owner of the data about him-/herself, a patient has the right to get and inspect all basic, treatment and other data recorded about her/him. However, this data is typically in the form of inconsistent data entries, such as medical reports, x-ray and other images, blood test admission notes and results, medication history and diagnoses, and is provided to the patient “as is”. The structure, format and meanings of these data entries differ enormously. Thus, when a patient is given access to all data stored about her/him, (s)he usually lacks capabilities and tools to handle the data, and to use the data for her/his benefit. Still, patients are expected to be able to act on the basis of the data available to them, for example, to make appointments or to bring laboratory test results with them. In a previous study, we made the data of similarly different medical and patient ISs interoperable to the cancer specialists of breast cancer cases by using shared attributes as the linkage between data storages. In this conceptual article, we apply our federative approach to contemplate from the patient’s point of view, how data available to a patient could be made interoperable. We explain the theoretical background of the federative approach and related tools within the mentioned breast cancer case and in general. We then describe how the federative approach could be used in the context of digitalized citizen/patient services, empowered citizens and patient/citizen-centric care. With this article we contribute to research by developing the federative approach further and by explaining how (medical and patient) data can be made interoperable to patients/citizens. Our results suggest means to support citizens and digitalized healthcare service intermediaries as well as patient empowerment.