National data service will simplify access to health data for research

The new service, backed by £100 million from Wellcome and up to £500 million from the UK Government, will give approved researchers a single secure route to health data where personally identifiable information has been removed. The goal is to reduce barriers that researchers face by simplifying access to datasets such as primary care, hospital and mortality data.  

Harnessing combined data on a national scale will help researchers develop deeper insights into human health and disease, which leads to better ways to prevent, diagnose and treat conditions. 

Consultation with patient groups and academic, clinical and commercial researchers will ensure a world-class health research data service is developed quickly while putting patients’ needs and treating diseases first. The service will work closely with experts across the NHS who have been rapidly improving its capacity for making data accessible for analysis.

The new service will be housed at the Wellcome Genome Campus in Cambridgeshire, UK.

Researchers can already securely access a range of data sources, including some NHS datasets. But they face obstacles and delays in accessing and analysing them. Researchers also can’t access all health and health-relevant data at national or regional level. Differences in how data is collected, sorted, linked and stored add to these challenges.

This means researchers may have to submit multiple time-consuming applications to access different datasets if they wish to compare information across regions, for example.

Together these barriers are slowing down progress in understanding health and addressing illnesses. 

“There is so much more we could learn from health data in this country by joining it up better,” says John-Arne Røttingen, Chief Executive Officer of Wellcome.

“The simpler it is to analyse data or identify patients to join clinical trials, the more quickly we can improve our understanding of illness and develop new treatments. 

“Providing a single, secure service for approved researchers will take away the significant overhead associated of locating, accessing and comparing disparate datasets. It will create opportunities for patients to access new treatments through trials that would otherwise have been hard to arrange or conduct.” 

Creating the service was a recommendation of the Sudlow review, commissioned by the Chief Medical Officer for England, the UK National Statistician and NHS England’s National Director for Transformation.

Simplifying access will not affect security of patient data. The new service will allow for de-identified data to be analysed without being exported. This means health data will remain in existing Secure Data Environments, managed by the appropriate data controllers.

Public trust will be essential for the success of the service. Wellcome is committed to ongoing involvement with patient groups to shape the approach. 

We also want to ensure it is easy for people to understand more about how their data is being used and how the research benefits them and the NHS.

The potential benefits of the new service span research, people’s health and health services. 

It aims to:

• Enhance research opportunities: easier, secure access to data will foster collaborations and allow researchers to quickly analyse information, leading to faster advancements in understanding diseases.
• Improve health: by harnessing a wider range of patient and other health-relevant data, researchers can identify the causes of diseases and develop better diagnostics, treatments and preventive measures.
• Increase clinical trial participation: combining data will make it easier for researchers to find patients who may benefit from clinical trials, making them simpler to launch and accessible to a broader range of participants.
• Improve health services: insights gained from research can inform changes to the healthcare system, helping predict and meet the needs of an ageing population.
• Advance the UK's research leadership: by creating a world-leading research service, the UK strengthens its position as a hub for scientific innovation and health data research.

Wellcome supports a broad programme on data for science and health, and hosts existing, state-of-the-art genomics and data infrastructure at the Wellcome Genome Campus.

Our proven track record, emphasis on patient involvement, and significant financial contribution, paired with the government-driven aim to create a world-leading centre for health data, will catalyse the rapid establishment of the service.

The Wellcome Genome Campus is already home to the Wellcome Sanger Institute, EMBL-EBI, Genomics England and many smaller and start-up companies in its Biodata Innovation Centre. 

The campus is undergoing a significant expansion. Over the next few years, the size of the campus will grow from 125 acres to 440 acres and the number of scientists and support staff working there will increase from around 3,000 today to around 10,000. 

“We’re pleased to be providing our support to help establish the new service quickly. This public-philanthropic partnership will put public trust in the use of health data at the heart of its approach," adds John-Arne Røttingen.