Coming soon: the Scottish Safe Haven Charter 2.0

The importance of the Scottish Safe Havens in realising Research Data Scotland’s (RDS) charitable aims is hard to overstate. From the founding of RDS, we’ve worked together through the Scottish Safe Haven Steering Group to bring together the experience and expertise in the Safe Havens, and develop the network as a cohesive and federated entity. Federation is not a new ambition, but one which was integral to the Scottish Safe Haven Charter, published in 2015.

This Charter sets out agreed principles and standards for the Scottish Safe Havens to handle data from their respective health boards (as well as from Scottish Government in the case of the National Safe Haven), and work as a federation. Specifically addressing health data scenarios, where obtaining individual patient consent while safeguarding patient identity and privacy is impractical, the Charter emphasises the paramount importance of process transparency.

Commissioned by the Scottish Government and developed by NHS health boards working alongside universities, the Charter was written before RDS’ time, coinciding instead with the Scottish Informatics and Linkage Collaboration (SILC). SILC was established to facilitate data linkage for statistical and research purposes. Comprising the National Safe Haven, eDRIS (the electronic Data Research and Innovation Service, which is part of Public Health Scotland) and the indexing team at National Records Scotland, SILC leveraged technical infrastructure provided by the Farr Institute.

It was from this collaboration that RDS has been working to further develop and build on the positive working relationships that had been established but with an organisational structure better suited to the transformational task in hand.

So, there’s the potted history; what’s the point? Time waits for no one, and much less official government publications. Currently, the Safe Haven Charter speaks to a much changed landscape in Scotland, and so Scottish Government has commissioned RDS, in collaboration with the Scottish Safe Haven Network (SSHN) to commence work to deliver a refreshed Safe Haven Charter in 2024. This is necessary for three reasons.

1. Technological progress 

Technological advancements have transformed research possibilities with public data, presenting both opportunities and risks for Safe Havens. Now, they play a critical role in training AI for healthcare, necessitating stringent privacy safeguards. The review ensures the Charter remains relevant to current research demands, promoting consistency and trust across the Safe Haven Network.

2. Scaling up 

The pandemic accelerated recognition of the extensive benefits data insights can bring, across research, service delivery, and policy design. The need to process these requests in a simpler and more intuitive way is among the motivations for establishing RDS, a development that the current form of the Charter does not address.

3. Federalisation and policy progress 

Significant policy developments have also occurred. The Safe Havens’ role in enabling evidence driven policy sees them referenced as an integral component to the Scottish Government’s Health and Social Care Data Strategy. This strategy emphasises the goal of federalisation, and contains the commitment to “continuously review and refresh” relevant national guidance, giving the Charter as the first example of such a document.

Growing government interest is further demonstrated by the establishment of the Unlocking the Value of Data group in 2022, whose goals diverge from the current Charter’s focus. Interest and investment in data infrastructure is evident in initiatives like DARE, alongside the UK Government’s significant investment of around £250 million in NHS England’s Secure Data Environments (SDEs). This specific investment has rapidly advanced the English system and highlights the need for a federalised network in Scotland; an updated Charter is essential to achieving this goal.

To maintain Scotland’s competitiveness within the UK, this disparity needs to be met with both proportionate investment and a tailored operational framework. While Scotland’s Safe Havens are highly advanced, and recognised internationally, there is concern that without a concerted effort to bring expertise and experience together across Scotland, this edge will be lost.  Addressing disparity in data infrastructure investment across the UK is pivotal to enabling this collaborative effort.

It is in light of these three factors that RDS and the SSHN are now collaborating to deliver a refreshed Charter, as commissioned by Scottish Government. Together with the support of other key stakeholders, this work will address these developments and deliver a Charter fit for the decade. The momentum and collaborative spirit of the Scottish Safe Haven Steering Group, coupled with significant interest and investment in secure data research across the UK, make this an opportune moment for a refreshed Charter, that clearly outlines the role of Scottish Safe Havens, and underpins the importance of investing in this vital national infrastructure.

For more information on the refresh of the Safe Haven Charter, get in touch at engage@researchdata.scot