Working with the UK’s rich health data

The UK has rich and diverse health data which provides exceptional opportunities for research and innovation. Despite this opportunity, the transformative potential of health data research is far from being realised in full. Only a fraction of NHS, biomedical and health-relevant data is accessible to inform research. It can take a very long time to apply for data access and have all the relevant approvals, checks and safeguards in place to do the analysis. And once data access is granted, data can of variable quality.

Changes in terms of strategy and associated funding are on the horizon, but many datasets are still held, unconnected, in individual institutions and often on data platforms that lack the computing infrastructure required for advanced analysis. There are major research and technological skills shortages. Public trust and confidence in the use of health data for research remain vulnerable.

Health Data Research UK (HDR UK) is the national health data science institute with the mission to unite the UK’s health-relevant data for the maximal public good. We want to democratise the access of data so that all potential users with sound ideas of how data can improve the health and wellbeing of population can access it.

A recent collaborative event between BioIndustry Association (BIA) and HDR UK provided an opportunity for the BIA members to explore the challenges they face in mobilising data for health and care research and discuss current support and future solutions.

Fortunately, many solutions are becoming available. The first is the HDR UK Innovation Gateway, which is becoming a portal to enable discovery and access to diverse health and care data from across the UK. With over 700 datasets and 2,000 users, the Gateway also offers tools to help access and use data, such as tools to discover the characteristics of datasets.

Secondly, a network of nine health data research Hubs based in specialist areas provides a tool kit of healthcare datasets, infrastructure and knowledge to help SMEs more efficiently find, access, understand and use data to improve people’s lives. Each Hub has distinctive expertise covering different clinical specialities including cancer, respiratory health, mental health and other common conditions.

The strength of the hubs is the concierge service they offer to streamline access to data and their deep data and subject matter expertise in their specialist areas. The hubs work in partnership with industry partners, including SMEs to draw on their service and enable innovative research. For example, Precision Health, an SME focused on personalised medicine approaches, has worked with the BREATHE Hub, combining data provided by BREATHE with their novel combinatorial analytics platform to identify how genes and biological factors work together to affect each patient’s condition.

Steve Gardner, CEO of Precision Life described the benefits of working with BREATHE:

"The facilitation of data sharing agreements, the establishment of a trusted research environment and relationships with key UK academic groups was significantly quicker and smoother via BREATHE Hub than it would have been if we had to negotiate separately with every institution involved"

Hubs are also working with SMEs to generate and use synthetic data. Synthetic data provides an artificially generated copy of a real-world dataset with similar properties to the original but without the privacy risks of working with sensitive personal data. BREATHE and PIONEER, the Hub for acute care, have been working in partnership to develop resources for SMEs interested in the potential of synthetic data. View the SME guide to synthetic data.

Meeting attendees confirmed that there is still much to learn and new solutions are required. To understand more about the challenges and unmet needs experienced when accessing healthcare data, we have launched a survey for SMEs. Some of the challenges for SMEs may include the lack of availability of well-structured and high-quality data, or the time taken to contract for data and expectations of IP sharing for early discovery.

We are keen to hear from you about your experiences and suggestions for improvements. Please spend a couple of minutes sharing your views.

Dr James Pickett is Hub Development Manager at HDR UK, interested in the creation of large, safe data sharing initiatives across the UK.