Skip to content
Our approach

Patients will be the North Star of HDRS

Patients are the reason HDRS exists. We are here to enable research that will lead to better health outcomes for people across the UK.

Smiling medical professional talking to a child in a medical gown.
co-design

HDRS will be built with and for patients, through:

Robust governance

Ensuring patients and the public are at the heart of our decision making on an ongoing basis

Engagement and involvement

To ensure patients and the public continue to shape decision making around HDRS design and delivery.

Communication and transparency

To demonstrate trustworthiness and understanding about how health data is used, its safeguards and its impact.

Accountability

Oversight built on transparency and confidence

Strong governance will guide how HDRS operates, ensuring transparency, accountability and public confidence. As the service develops, formal structures will support responsible decision-making and oversight across data use, ethics and public involvement.

Patient and Public Involvement and Engagement

Patients and the public will help shape how the service develops. Their perspectives will inform how health data is used for research, helping ensure the service reflects public expectations and delivers clear public benefit.

Transparency

We will operate openly and transparently, explaining our decisions as we go and with ongoing dialogue.

Ethics board

Independent ethical oversight will help guide how health data is used for research. This will ensure studies supported through our service meet high ethical standards and are conducted responsibly.

Linking clinical trial and NHS data for over 6,500 men in Scotland showed statins reduced heart attacks and deaths by over 30%, while cutting hospital admissions – evidence that now underpins routine preventive treatment across the NHS.

Data to discovery

case study

Data protection

Strong safeguards for sensitive data

Public and patient voices will be central to how the service evolves. Through ongoing engagement and involvement, your views will shape decisions about how health data is used for research and how it improves health. Further information about public and patient involvement will be shared as HDRS develops.

View Five Safes framework