Data for Research programme

‘Data for Research’ programme: enhancing health and care research in Wales 

The ‘Data for Research’ programme aims to maximise the safe and effective use of routinely collected health and care data for research, as part of a UK system of digital support services for clinical trial delivery.

The programme will transform the way health data is accessed and used, providing a rich resource for researchers to address large-scale population health questions and improve patient outcomes. Its overall ambition is to harness data precision to support Wales’s offer as a world leading destination for research, which aligns with the similar ambitions of the UK Clinical Research strategy and the UK Life Sciences Vision.

The programme focuses on two main areas: 

1. Increasing data linkage and access: We are expanding the range of data available to approved researchers through Secure Data Environments. This includes projects to integrate multi-modal data, such as genomic and imaging data, and collaborations with key stakeholders like Health Data Research UK and the Public Engagement in Data Research Initiative. 

2. Data-driven clinical research delivery support: Identifying trial participants is often resource-intensive and imprecise. The programme aims to use digital tools and data to streamline this process, increasing the speed and efficiency in trial feasibility, delivery and follow up, and ensuring more equitable access to research opportunities. 

Safe and secure data access 

Since 2007, Health and Care Research Wales has funded the SAIL Databank, a leading UK asset that provides secure access to a wide range of linked datasets. Every day, NHS Wales and related services collect vast amounts of data as part of their routine operations. This data offers a comprehensive picture of individuals and population health issues, making it an invaluable asset for researchers. By increasing the linkage and breadth of data, we can support more effective and innovative clinical trials, ultimately improving health outcomes for the population.

The Data for Research Programme will build on this foundation, exploring new ways to enhance data coverage and accessibility. 

Health and Care Research Wales is committed to maintaining the highest standards of data security.

Support for research delivery

The feasibility of running a study in Wales often relies on asking health professionals to estimate how many of their patient population are likely to be eligible. This is resource intensive and imprecise. Using data to support the feasibility assessment will increase accuracy but also support when we best locate a study to ensure we are recruiting from a wide range of communities.

The use of digital tools and data to support the identification and approach of individuals to take part in clinical trials also provides an opportunity to increase the diversity of clinical trial participation and how this is best achieved.

The follow up of participants and their outcomes can also benefit from digital advancements, by reducing the need for manual review of records, whilst providing data that is drawn from a variety of sources more efficiently.

Public engagement and future policy 

Our work includes engaging with the public to understand their expectations and concerns about data use, ensuring that our approaches are both effective and acceptable. Public engagement is crucial to the success of this programme, and we want to ensure use of data not only aligns with public expectations but supports the broader goals of health and care research.

A key component of the programme has been a deliberative public dialogue exercise, commissioned by the Welsh Government and conducted by the National Centre for Social Research (NATCEN). This exercise aimed to explore public attitudes towards the use of data for identifying and approaching individuals about research opportunities. The findings will inform future policy discussions and help shape the development of data-driven services in Wales. 

This work enabled a detailed exploration of a range of individuals views on the use of data for research purposes, how it should be accessed, by whom and in what circumstances.

Download the report (pdf) detailing the approach and findings of this exercise.