The evolving health data ecosystem presents new challenges for policymakers and the industry. The demands emanate from the increasing adoption of data-driven products and services to enhance health outcomes. Consequently, there is a mounting need to understand and document the stakeholders, the emerging data types and their uses in a more structured manner.
To address the need, the Future of Privacy Forum (FPF) partnered with the Information Accountability Foundation (IAF) to form the FPF-IAF Joint Health Initiative in 2018. The Initiative has released A Taxonomy of Definitions for the Health Data Ecosystem. The overarching intent is to enable a more nuanced, accurate, and common understanding of the current state of the health data ecosystem. The initiative aims to accomplish it by employing the taxonomy to outline the established and emerging language of the health data ecosystem. The Taxonomy includes definitions of the:
Furthermore, A Taxonomy of Definitions for the Health Data Ecosystem is an educational resource that will enable a deeper understanding of the current landscape of stakeholders and data types. 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, compile an inventory of the data flowing into and out of their organizations, and participate in complex data exchanges.
In addition, the taxonomy can be utilized to create consistent data collection and deploy 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. The proposals include provisions requiring organizations to undertake data mapping and inventory activities.
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