This page provides an overview of Health Data Research UK’s Development Principles that organisations and individuals must adhere to as part of their involvement and engagement with us.
Our aim is to make the UK home to data-driven research, scientific advances and innovation in healthcare to improve patient outcomes. The UK has some of the richest healthcare datasets worldwide. However, NHS and health research data are not always accessible, and their potential uses for research and innovation are not being fully realised. The approach is to increase the access and use of health data in a trustworthy and ethical way in order to develop improvements in the UK’s health technology and deliver benefits to patients and the population.
Our development principles are for all organisations involved with HDR UK (including Health Data Research Hubs, members of the UK Health Data Research Alliance, or organisations using data).
The development principles draw on national, international and industry best practice frameworks and recommendations. They will guide working practices and should be reinforced through specific agreements through which organisations will engage with eachother. Following our values, they are set out as a list of high-level principles below.
Health Data Research UK Development Principles
- Patients, the NHS and public centred – The infrastructure development will be focused on delivering benefits to patients, the NHS and the wider public, and building confidence and trust in how data is accessed and used in research and innovation. All development will actively engage patients, the NHS and the public throughout.
- User-design led – The experience for our user community is paramount. All development will follow best design practices, actively engage the user communities throughout and be developed in the open to enable continuous user feedback. The design will be delivered as “Design as Code” to demonstrate working capability.
- Agile development – Adopt agile development processes and tools to allow us to deliver exemplars quickly and then build on that experience. At each stage test our approach based on how well it supports our research and innovation user community.
- Open first – Support open standards throughout our delivery. Use open-source where possible and share HDR UK-developed technology assets openly under the MIT licence using the HDR UK GitHub repository.
- Modular and extensible – Requirements and tools will evolve. All capability will be integrated through open and documented APIs.
- Cloud-first – Deploy to Public Cloud by default falling back to on-premise private cloud only where compute or storage makes this significantly more cost-effective.
- Reuse – Work with open source and our academic and commercial partners to enable reuse whenever possible. New development should be the exception, not the default.
- Build in the ‘ities’ from Day One – architect for interoperability, scalability, reliability, availability and security throughout the development. This is a production environment and not a research project.
Principles for Participation
UK Health Data Research Alliance Principles for Participation set out additional guidance and expectations for organisations involvement in our work.