FPF and IAF Release “A Taxonomy of Definitions for the Health Data Ecosystem”


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. We hope it will be valuable as a common, reference language for the evolving health ecosystem. This is particularly important as organizations take on more data governance projects, take inventory of the data flowing into and out of their organizations, and participate in complex data exchanges. We intend the Taxonomy to be used to create consistent data collection and use models across the healthcare ecosystem. Establishing common, shared terminology is particularly useful as state privacy laws and pending Congressional proposals seek to codify a comprehensive consumer privacy framework in the United States; these proposals often include provisions that would require organizations to undertake data mapping and inventory activities.

For additional information about this Taxonomy or the Joint Health Initiative work between the Future of Privacy Forum and Information Accountability Foundation, please contact Stan Crosley ([email protected]) and John Verdi ([email protected]).