The UK Health Data Research Alliance (the ‘Alliance’) Letter of Intent highlights transparency of governance and operations as one of the founding principles. To improve transparency in the use of health data for research, the Alliance convened a community of data custodians, researchers, regulators and public contributors to develop recommendations for a data use register standard.

Following the publication of the Standard in January 2021, the Alliance has been working with its members and wider community to encourage adoption. In a great demonstration of best practice, Our Future Health has published a register of approved studies that have used data under their custodianship on the Health Data Research Gateway (‘the Gateway’).

Improving transparency in health data use

Our Future Health is the UK’s largest health research programme, designed to help people live longer and healthier lives through the discovery and testing of more effective approaches to prevention, earlier detection, and treatment of disease. The programme recently established an access process to enable secure access to data by researchers. This Our Future Health data use register will act as a platform for communicating who, how and most importantly why this data is being used.

By using the Gateway, Our Future Health have made their register available to a wider audience and easy to find (as defined by a simple, quick and intuitive user journey), and in an accessible format that includes at least the minimum dataset defined by the Alliance.

The approved research studies published have been aligned to the Five Safes Framework, providing the public with key information on the organisations accessing the data, alongside the purpose and public benefit of the data being accessed. Additionally, by linking to metadata listed on the Gateway, the studies also provide more information on the type of data being accessed.

Dr Raghib Ali OBE, Chief Executive of Our Future Health said:

“We’re delighted to be publishing summaries of all the studies to securely access our data on the Gateway. We want the public and our participants to be able to view a complete register of our approved studies on the HDRUK platform. This is vital for the transparency of our research programme – and an important step in communicating to our volunteers how their data is being put to good use and will lead to public health benefits.”

Engaging the public and researchers in the transparency of access processes

Having joined the Alliance in November 2021, the programme has not only embraced transparency in how data is used but has also implemented the Transparency Standards, which aim to improve the clarity and accessibility of information about data access processes for the public and researchers.

Our Future Health are one of nineteen organisations that were awarded funding to implement the standards, co-developed by the Pan-UK Data Governance Steering Group and HDR UK’s Public Advisory Board in August 2023. In a great example of active and ongoing engagement with the public, Our Future Health has worked with stakeholders – including researchers, ethics advisors, and governance specialists to create an engaging illustrated video that explains the access process. The simple and digestible video is designed to ensure accessibility for all users, including those with disabilities and English as an additional language.

This project aligns closely with all six of the transparency standards. The content developed also highlights the value of transparency of data use and ensures that researchers are aware, in advance, of their obligations and the information that will be made available to the public.


If you or your organisation are interested in hearing more about this programme of work or have an interest in improving transparency in data access and use, then please reach out to our Alliance team at