A Taxonomy of Definitions for the Health Data Ecosystem

Announcement: “Healthcare technologies are rapidly evolving, producing new data sources, data types, and data uses, which precipitate more rapid and complex data sharing. Novel technologies—such as artificial intelligence tools and new internet of things (IOT) devices and services—are providing benefits to patients, doctors, and researchers. Data-driven products and services are deepening patients’ and consumers’ engagement and helping to improve health outcomes. Understanding the evolving health data ecosystem presents new challenges for policymakers and industry. There is an increasing need to better understand and document the stakeholders, the emerging data types and their uses.

The Future of Privacy Forum (FPF) and the Information Accountability Foundation (IAF) partnered to form the FPF-IAF Joint Health Initiative in 2018. Today, the Initiative is releasing A Taxonomy of Definitions for the Health Data Ecosystem; the publication is intended to enable a more nuanced, accurate, and common understanding of the current state of the health data ecosystem. The Taxonomy outlines the established and emerging language of the health data ecosystem. The Taxonomy includes definitions of:

  • The stakeholders currently involved in the health data ecosystem and examples of each;
  • The common and emerging data types that are being collected, used, and shared across the health data ecosystem;
  • The purposes for which data types are used in the health data ecosystem; and
  • The types of actions that are now being performed and which we anticipate will be performed on datasets as the ecosystem evolves and expands.

This report is as an educational resource that will enable a deeper understanding of the current landscape of stakeholders and data types….(More)”.