Sensitive Data Management: The Need for Standards to Catch Up to Policy

By The EHR Association Sensitive Data Management Task Force

This is the first in an occasional blog series focused on framing the work that lies ahead to establish clear, consistent, computable standards governing the management of sensitive data.

Health information is personal. It is also essential to the provision of safe, coordinated, high-quality care. Stakeholders across the health IT ecosystem are intimately familiar with managing the tension between ensuring the right information is available to the right people at the right time and also respecting patient privacy, legal restrictions, and patients’ expectations about how their information will be used and disclosed.

While the tension is not new, the pace, complexity, and variability of the rules being applied to sensitive health information are.

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Part Two: Privacy & Consent Management Landscape and Challenges to Scale

By Hans Buitendijk, Chair, EHR Association Privacy & Consent Task Force

In Part One of this two-part blog series, we introduced the challenges in today’s privacy and consent management landscape and discussed different approaches for rules management. In Part Two, we put forth a proposed roadmap for establishing the necessary framework for privacy and consent management. 

A Roadmap for a Complex Infrastructure

Defining the critical components and standards, and establishing the necessary infrastructure is no small undertaking. It is not sufficient to simply have standards on how to communicate any tags, such as HL7 DS4P for documents, FHIR Security Labels for FHIR resources, and the ARV segment for HL7 v2. Not only that, but more is needed when v2, CDA, or FHIR are used to communicate data that must have tags beyond the data itself to enable evaluation of rules by the receiving system. This is especially true when data can be exchanged in many other formats and ways, including proprietary formats, and when sensitivity is based on the context of multiple data elements that, on their own, would not be considered sensitive, as well as when a patient’s data sharing rules may not involve a well-defined set of data values.

The $64,000 question is, how can we make progress? 

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Part One: Privacy & Consent Management Landscape and Challenges to Scale

By Hans Buitendijk, Chair, EHR Association Privacy & Consent Task Force

As health data flows more widely and automatically across providers, payers, patients, public health, researchers, and others, automated tools to filter for data that is not authorized to be shared have become imperative.  

To date, relatively simple and coarse methods have been deployed where large data sets are excluded from exchange:

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