A common framework for health data governance standards

Published in the journal, Nature Medicine, the team at SeRP with colleagues across Population Data Science, have proposed a six-tiered governance framework for federated health data, with varying levels of data access and sharing, to facilitate the use of health data held within more than one secure environment, while preserving privacy.

Standardised data governance approaches enable communication, transparent sharing and the potential of operational federated analytics for data-intensive medical research to improve patient care.

During the COVID-19 pandemic, temporary changes in governance rules and regulations enabled the use of health data for the timely investigation of new and urgent hypotheses. Preserving these operational governance models beyond the pandemic could enable the systemic transformations needed for the federation of health data — in which data from various origins or systems is made accessible in a transparent and trustworthy manner.

In the pandemic example, health data might physically move out from its original platform, creating new flows, or it might stay at the source but with access or analytics facilitated via technological solutions.

Governance challenges

There are several governance challenges involved in achieving a common approach for consolidating personal health data from different platforms. Existing governance models are often incompatible or limited in their ability to achieve a desirable data environment for optimal health research.

A compatible governance model for federated health data should enable secure access to individual-level data from multiple sources and multiple locations, with comparable metadata describing the content of the data and the details of data sources. Patient-level data hosted in a single place should then be able to move or be accessed securely across multiple governed platforms. However, a governance model to define requirements for multi-platform data access does not currently exist.

This proposed six-tiered framework for Federated Health Data (FED-HD) governance with measurable components for each type of data access, reflects the readiness of a Trusted Research Environment (TRE), to facilitate federated access across a multi-platform data ecosystem. This article in Nature explains the rationale for each type of access model, with operational examples from collaborative projects in the UK and beyond.

Read the full Nature article here – https://www.nature.com/articles/s41591-023-02686-w