Information Commons for Research

Health Data Research UK (HDR UK) is working in partnership with the public, NHS bodies, academia, industry and charities to develop an Information Commons for Research.

An information commons facilitates the secure storage, access, and sharing of health, biomedical data and associated tools, to support researchers to perform novel scientific research.

The HDR UK Information Commons for Research will develop a fully integrated, federated health research information infrastructure, with access to both deep clinical data and extensive unstructured and large biomolecular data on individual patients and populations.

The Information Commons for Research will be an exemplar of a trusted and well governed approach to the sharing of resources and research data, accelerating the impact of health data science for public benefit. The Industrial Strategy Challenge Fund, Digital Innovation Hub programme will accelerate the delivery of the Information Commons for Research.

HDR UK does not control any data. Instead we provide expertise and work with partners and data controllers to allow the sharing of analysis and results using built-in governance, analytical and collaboration tools, APIs and data services.

In 2018/19 HDR UK is working in partnership to develop a coordinated governance and technology strategy, underpinned by a harmonised approach to patient and public involvement, sharing of research data, robust information governance and flexible analytical environments.

The programme builds on best practice from across the UK, including but not limited to: UK Biobank, ALSPAC (Avon Longitudinal Study of Parents and Children) and other research cohorts, Dementias Platform UK, NIHR Health Informatics Collaborative, NHS Digital Data Platform, European Bioinformatics Institute, and Genomics England. Our approach will subscribe to the principles developed by the Global Alliance for Genomics and Health:

  • Respect for the data sharing and privacy preferences of participants
  • Transparency of governance and operations
  • Accountability to best practices in technology, ethics, and public outreach
  • Inclusivity by partnering and building trust among stakeholders
  • Collaboration to share data and information to advance human health
  • Innovation in order to develop an ecosystem that accelerates progress
  • Agility to ensure we act swiftly to benefit those suffering with disease
  • Independence by structure and governance.

The aim is to ensure that health data research analyses can be performed across the entire UK health data science ecosystem.

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