Work

The UK Health Data Research Alliance was established in February 2019 as an independent alliance of health data providers, custodians and curators dedicated to improving human health by maximising the potential of data to accelerate progress in biomedicine, health and care. It is made up of partner organisations (members),...

The value of effectively and safely linking consented data (that requiring active assent from those providing it, e.g. the donation of biological specimens) with routinely collected medical data for research was highlighted by the UK Health Data Research Alliance (The Alliance). It was acknowledged that researchers face many...

Innovative Data Governance Frontiers meeting 4th November 2022 Convening a multidisciplinary group, including academic researchers, scientists, NHS colleagues, representatives from industry, government, media and legal professionals and patient and public representatives, allowed diversity in a shared vision to tackle the...

Alliance members are committed to being transparent around their governance processes for accessing data and the approved uses of that data. As such, publishing a register of projects, studies and organisations that have used data under their custodianship is a vital demonstration of this. The work of the Alliance...

* Registration is now OPEN * for the next Alliance Diversity in Data – Ethnicity coding standards working group meeting, taking place on Wednesday 24th May 2023 (10am – 4pm). We are excited to be hosting this meeting in-person, at the College Court Conference Centre in Leicester, and we hope you can join us for the...

The aim of this workstream is to bring together representatives from Alliance members to share best practice in public and patient involvement. We run quarterly meetings for PPIE leads.

Through the data standards and quality delivery workstream we bring together data officers from across the Alliance to oversee, coordinate, and produce guidance and policy regarding: data quality, data standards, meta data standards, dataset publishing, data provenance, ontology / terminology services and use.

This workstream brings together Alliance members and the wider health data research community to discuss, define and develop standard approaches to Trusted Research Environments (TREs), also known as ‘Data Safe Havens’ or ‘Secure Data Environments’. TREs are an essential way of managing risk of unauthorised...

The ‘Gateway’ is a portal to help researchers find and access health datasets and other resources such as tools that exist across the Alliance, as well as other organisations in the UK and internationally. The Gateway has been developed with input from patients, the public, researchers and innovators working in health...