In January of 2022 the UK Health Data Research Alliance (the ‘Alliance’) published recommendations for a data use register standard. The standard outlines five recommendations to support data custodians and controllers responsible for the safe storage, processing and sharing of data, to become more transparent about whom, how and why health data is being used for research.
Building and maintaining public trust through transparent data access procedures is also a key priority for our public involvement and engagement work. Therefore, ensuring the public are involved in decisions on how data is accessed and used is vital. An important part of this will be to regularly engage wider patient and public communities, particularly from those who are currently underrepresented in health data research, to ensure the data use register meets their needs – as one of our HDR UK public contributors says, “we have a public duty to ensure this happens”.
“Standardisation of these data use registers is vital to enable consistency, transparency and accountability”. – Paul Simmons, Public Contributor
But whilst establishing a standard will provide a consistent framework to support this ambition, translating this into practice may prove more challenging.
How much change is required?
Data custodians are at different stages in this journey, as evidenced by our analysis on the current state of data use registers published in May 2021. The key learning from this research was that nearly 50% of data custodians do not have a public record of data they have shared with other organisations or individuals. While other custodians might publish a list of approved projects or data uses, the information available is limited or not always accessible.
A clear first step to facilitate change and create a culture of transparency and openness amongst data custodians is to encourage all data custodians to publish a data use register. This was deemed to be the biggest priority for the range of patients and members of the public we worked with given its importance in demonstrating a trustworthy approach.
Almost all organisations consulted during the last month recognised the value and need for a data use register. More than 50 organisations have helped develop this standard and are committed to improve transparency.
Change has already started
Some data custodians are currently in the process of developing a data use register or have already demonstrated transparency by implementing the standard on their own platform. For example, the Health Data Research Hub Discover-NOW recently published a tracker of approved data access requests. The register was previously limited to COVID approved projects but has since been expanded to include all projects approved by the North West London Data Access Committee.
We believe through the drive and leadership of the Alliance, there is great potential for this to become a priority for all data custodians moving forward. To better support Alliance member organisations meet the principles of transparency and align with the standard proposed, Health Data Research UK has developed a data use register for the Health Data Research Innovation Gateway (the ‘Gateway’). A development welcomed by many of the patients and members of the public we have engaged with, including members of the HDR UK Public Advisory Board who highlighted the need for a register in their recent recommendations to building trust in data access.
Implementation of the data use register standard via the Gateway
The Gateway data use register will be offered to data custodians as a platform to improve transparency of data uses for datasets made discoverable on the Gateway. The design and functionality of the register has been heavily informed by the standard, with individual data uses structured according to the Five Safes framework and including fields that have been recommended in the standard.
The register will improve accessibility for members of the public through its user-friendly interface and design. Additionally, the aggregation of data uses across different custodians will allow for better insights into data usage.
Thus far, data uses have been published on the Gateway data use register, which represents 13 data custodians. However, to drive further use of the register and adoption of the standard, we have planned a series of activities that we will support Alliance member organisations in delivering.
Commencing April 2022, data custodians using the Gateway will be asked to provide information on their data uses, which will be reported to the Alliance Board on a quarterly basis. This will provide a clearer picture of how data custodian behaviour is changing over time.
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