The Need for Machine-Processable Agreements in Health Data Management

Abstract

Data processing agreements in health data management are laid out by organisations in monolithic “Terms and Conditions” documents written in natural legal language. These top-down policies usually protect the interest of the service providers, rather than the data owners. They are coarse-grained and do not allow for more than a few opt-in or opt-out options for individuals to express their consent on personal data processing, and these options often do not transfer to software as they were intended to. In this paper, we study the problem of health data sharing and we advocate the need for individuals to describe their personal contract of data usage in a formal, machine-processable language. We develop an application for sharing patient genomic information and test results, and use interactions with patients and clinicians in order to identify the particular peculiarities a privacy/policy/consent language should offer in this complicated domain. We present how Semantic Web technologies can have a central role in this approach by providing the formal tools and features required in such a language. We present our ongoing approach to construct an ontology-based framework and a policy language that allows patients and clinicians to express fine-grained consent, preferences or suggestions on sharing medical information. Our language offers unique features such as multi-party ownership of data or data sharing dependencies. We evaluate the landscape of policy languages from different areas, and show how they are lacking major requirements needed in health data management. In addition to enabling patients, our approach helps organisations increase technological capabilities, abide by legal requirements, and save resources.

Keywords

• data sharing
• consent
• privacy policies
• privacy languages
• genomic data
• genomic medicine