NHS Digital have launched their new Data Uses Register as a way to improve patient data transparency. NHS Digital’s data is already published and available, but one of the major changes that the new tool will do is provide details of which organisations access the data, and their purposes for use.
Some of the organisations using the data include public sector bodies, charities, or commercial companies. In order to access the data, they must have a legal basis, and a legitimate reason to use the data. They must also only be able to use the data for health and care planning, and research purposes.
NHS Digital published a review of the impact of data, released through the Data Access Request Service, to create further transparency around how data is used.
NHS Digital Interim CEO, Simon Bolton, said: “The new Data Uses Register is an important improvement to make our data sharing agreements more transparent and user-friendly.
“We take our responsibility as the guardians of NHS data very seriously and we are committed to being transparent so that people can see exactly who their data has been shared with and why.
“It is important that the public can see openly and clearly how NHS data is shared to build confidence and trust and this new tool will help to ensure that.”
Under this management of data, it will never be sold, and access will never be granted for:
• Insurance or marketing purposes
• Promoting or selling products or services
• Market research
Although there are protective measures such as this in place, patients can opt out of sharing their data for planning and research purposes. Any requests for data will go through a rigorous review process by NHS Digital and independent groups, against published criteria.
Applicants requesting their data, are also required to prove that they meet security standards, as well as sign contracts that control how the data they access is used. Those contracts include details of the reasons the data may be used, which must be for the benefit of health and social care.
NHS Digital hope to continue improving transparency through the data release register, and aim to improve the service based on feedback from users. The register can be accessed at NHS Digital Data Uses Register - NHS Digital.