About

The NHS hosts some of the most valuable data in the world: a digitised, longitudinal record, across entire care pathways, for an incredibly diverse population. And yet, the question of how to fulfil this value remains an open one. We previously showed that despite high volumes of data flows, there were multiple issues across national data infrastructure:

  1. A large amount of our data remains ‘untapped’, trapped behind proprietary electronic health record systems and archaic document formats. New research infrastructure has often reshuffled the same data that’s been around for decades into new environments;
  2. The NHS is not achieving value from its own data. Rather, value (often monetary) is being generated once data had left NHS firewalls;
  3. The landscape is both complicated, and opaque.

That is why we are working with the Tony Blair Institute to comprehensively map NHS data architectures, data sources, and data flows - and to build up a library of information about NHS data. The objective is twofold: to help improve our collective understanding, and to help inform strategic gap analysis.

Roadmap

Here’s what we want to focus on over the next few months:

  1. Adding detail to the national schematic
  2. Adding regional architectural schematics, such as SDEs and research environments
  3. Describing the different NHS APIs
  4. Describing NHS data quality, and fitness for different purposes
  5. Describing specific data systems, and characterising their ease of data access
  6. Describing laws and processes around information governance, data access, and research approval

Collaborating

As of August 2024, the information hosted on this website are still basic and incomplete. We are reaching out to the community to feed back and help make this resource better. Please get in touch through this form.

Working with:

Tony Blair Institute London AI Centre

Contributors

Contributors will be recognised here.