The register was developed as a direct implementation of the standard, published a few months earlier in January 2022 and embodies all 5 recommendations:
- Recommendation 1: All data custodians and controllers responsible for the collection, storage and sharing of data for the purpose of research, innovation and service evaluation should publish and actively promote a public record (data use register) of approved research studies, projects and other data uses.
- Recommendation 2: Data use registers should, as far as possible, be populated in near real time directly from information provided through the Data Access Request process to improve timeliness and accuracy of entries.
- Recommendation 3: Data use registers should be made available in both human readable and machine-readable formats to maximise their utility.
- Recommendation 4: Data use registers should have a consistency of format and content, based on the Five Safes framework, to enable ease of understanding and aggregation of registers.
- Recommendation 5: Researchers, data custodians and funders should use data use registers to close the loop on the impact of data use by including, where possible, links to research findings and other outputs as these become available.
Custodians with datasets listed on the Gateway are encouraged to make use of this feature, which offers a wealth of benefits.
The direct impact on transparency
The scale and need for change was evidenced by our analysis on the current state of data use registers, which highlighted that nearly 50% of data custodians do not have a public record of data they have shared with other organisations or individuals. While many custodians might publish a list of approved projects or data uses, the information available is often limited or not always accessible.
Since its launch, the Gateway Data Use Register has made 844 data uses by 18 custodians discoverable. Most notably, the register has increased the quality and depth of information shared, by ensuring that the majority of data uses include the minimum information. These seven fields (project title, lead applicant organisation, lay summary, public benefit statement, dataset(s) name, latest approval date, access type) are considered the minimum for public and patient understanding of data use and are included in 83% of data uses published on the Gateway.
Automation and alignment to Five Safes framework
By integrating the register with the Gateway data access management system, custodians also benefit from data uses that are automatically generated.
Following approval of an application, a data use is automatically generated and uploaded into the data custodian data use register. This reduces the manual burden and need for administration, whilst providing the public and research community with timely and complete data.
To better demonstrate that only qualified people in secure settings can access the data, and only for purposes that benefit the public, individual data uses are structured according to the Five Safes framework.
Closing the loop on impact
The Gateway Data Use Register can also help close the impact loop. By providing a link to the outputs and outcome of data use the register makes it easier to understand how the data has been used and for what purpose. This feature centralizes and automates aspects of follow up with researchers. So far, 66 data uses have been linked to their respective outputs.
Whilst we acknowledge this needs to be a system wide effort, having the Gateway as a common portal can help the process.
NEW: Supporting integration and collaboration through the data use register widget
The data use register widget is the latest feature to be developed for the Innovation Gateway.
By using the widget, custodians will be able to increase transparency and accessibility of the data uses already published on their web pages and provide a clear and direct connection from their website to their Gateway data uses.
Data custodians who do not have a data use register yet will also be able to use the Gateway data use register exclusively, whilst maintaining a level of transparency and openness on their own branded platforms.
The widget has been co-designed and developed with extensive input from custodians to ensure that it integrates seamlessly with third party websites.
How to start using the widget or data use register
The data use register widget is available to be used by custodians using the Gateway data use register.
If you are interested in implementing this feature, or would like to learn more about the Gateway data use register please get in touch with then please get in touch with the Service Delivery and Improvement Team.
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