A Review of Privacy and Consent Management in Healthcare: A Focus on Emerging Data Sources

TL;DR

This paper reviews current legislation and privacy rules for emerging healthcare data sources like wearables and social media across several regions, highlighting the need for policy updates to support data-driven health initiatives.

Contribution

It provides a comprehensive analysis of legal frameworks for NDS in healthcare across multiple jurisdictions and recommends policy enhancements for future data-driven health applications.

Findings

Existing legal mechanisms vary significantly across regions.

Current regulations may be insufficient for handling the volume and sensitivity of NDS.

Recommendations aim to improve privacy and data management for emerging healthcare data sources.

Abstract

The emergence of New Data Sources (NDS) in healthcare is revolutionising traditional electronic health records in terms of data availability, storage, and access. Increasingly, clinicians are using NDS to build a virtual holistic image of a patient's health condition. This research is focused on a review and analysis of the current legislation and privacy rules available for healthcare professionals. NDS in this project refers to and includes patient-generated health data, consumer device data, wearable health and fitness data, and data from social media. This project reviewed legal and regulatory requirements for New Zealand, Australia, the European Union, and the United States to establish the ground reality of existing mechanisms in place concerning the use of NDS. The outcome of our research is to recommend changes and enhancements required to better prepare for the 'tsunami' of NDS and applications in the currently evolving data-driven healthcare area and precision or personalised health initiatives such as Precision Driven Health (PDH) in New Zealand.