Research Data Scotland (RDS), the Scottish government-commissioned body seeking to provide safe access for researchers to analyse health data, has published a revised set of key principles and standards to help unlock insights from examining scores of de-identified NHS records.

In the updated Safe Haven Charter, RDS provides guidance for the Scottish Safe Haven Network to support the use of data across Scotland by providing a trusted, secure framework for researchers accessing health data in a controlled and ethical way.

Safe Havens are highly secure computing environments through which approved researchers can access de-identified data and work on approved projects of public benefit.

It is the first major update to the original charter written in 2015.

Jonathan Cameron, Deputy Director of Digital Health and Care in the Scottish government, said:

“Since the first iteration of the Safe Haven Charter, we have driven an increased focus on the importance of data and its effective, ethical, and secure use in delivering new insights and approaches.

“We welcome the refreshed Charter as an important step to supporting the ambitions of Scotland’s Health and Social Care Data Strategy, and its aim of fostering greater collaboration with researchers and industry partners to drive innovation for public benefit.”

The updated Charter sets out a refined set of five clear principles, streamlined from the original seven, reflecting the Safe Havens’ collective focus on transparency, security, and public benefit.

RDS says the revised principles are designed to ensure clarity, foster greater consistency across the network of researchers accessing data for public health research in Scotland.

The principles also look to strengthen public confidence in how data is used to support research that benefits patients and the wider population.

Research-led population health change

The core principles underpinning the charter are five-fold.

Firstly, it looks to support public health and healthcare improvements by enabling research that can lead to more effective, safer health services and treatments, and contribute to a better understanding of the economic, societal, and environmental causes and development of diseases.

It also looks to ensure that all health and social care research and innovation conducted within the Safe Havens adheres to the highest ethical standards and legal requirements, maintaining public trust and integrity.

RDS says that, while individuals will have understandable concerns for their data-protection, the Charter seeks to uphold and protect patient privacy.

This is achieved through robust measures to safeguard patient identity and privacy, ensuring that data from electronic NHS patient records is processed, linked, and analysed in a secure platform while facilitating the approval process for data access.

The Charter sets the expectation that research will be of high-quality and innovative, and the safe havens will, in turn, provide access to comprehensive and well-maintained data sets within secure computing platforms.

Finally, the Charter looks to champion and promote collaboration. Research collaboration efforts across regional and national Safe Havens within Scotland and across the UK are encouraged. In doing so, whole-Scotland coverage or as close to it as practical can be achieved.

This ‘federated’ approach promotes a more inclusive research environment, engaging industry and maximising the collective impact of health and social care research.

Research Data Scotland was commissioned by Scottish government last year to review and renew the Charter, as part of its role as Chair of the Scottish Safe Haven Steering Group. This group includes members from:

• Electronic Data Research and Innovation Service (eDRIS)
• Health Informatics Centre (HIC), University of Dundee, East of Scotland Node
• Data Safe Haven (DaSH), Grampian
• DataLoch (Safe Haven for South-East Scotland)
• The West of Scotland Safe Haven (Greater Glasgow and Clyde)
• EPCC, University of Edinburgh

Layla Robinson, Chief Partnership & Strategy Officer at RDS, said the process of engagement both learned from the previous charter’s implementation and captured new insights:

“We’ve worked closely with the Regional Safe Havens to provide a comprehensive review and revised the Charter to incorporate changes in regulations, technological advancements, and lessons learned since implementation.

“Key areas of progress include embracing the ‘Five Safes framework’ within the Charter and maintaining robust assurance processes through external audits and rigorous self-assessments, which will enable the Scottish Safe Haven Steering Group to continue to uphold the highest standards.

“The introduction of annual compliance monitoring against the Charter, co-ordinated by RDS, will further ensure alignment with best practice and a culture of continuous improvement.”

You can read the details in the Charter.

Read more: Government failing to meet GP promises, says watchdog; Review: value of health data not being realised; Partnership working for Scotland's population health; New service to bolster Scotland's health research; Researchers ask: are you on too many medicines?; Rapid cancer diagnostic network improves outcomes; Dementia home care tech collab invites partners

Sign up to our bulletin for key health & social care updates straight to your inbox.