Supported by the Scottish Government’s Chief Scientific Adviser Office, RDS and RHS have agreed a framework for collaboration to work together to improve accessibility of data for research in Scotland.
Under the framework RDS and RHS will support access to public sector data in Scotland for research that has public benefit aligned to RDS’s long-term data strategy and brings significant the benefits of collaboration between organisations working as part of RDS on data access and linkage for research.
The long-term collaboration seeks to build a shared infrastructure and service for researchers with the ambition of improving social wellbeing in Scotland and attracting investment and jobs to our country.
Safe Havens in Scotland were established to support research excellence and rapid access to high-quality health data for research purposes. The RSH provide secure environments supported by trained staff and agreed processes whereby health data can be processed and linked with other related data and made available in a de-identified form for analysis to facilitate research for the public good.
The RSHs provide a safeguard for confidential information when used for research purposes. Any researchers applying for access to health data must adhere to the Safe Haven principles where robust governance procedures ensure the confidentiality of the data.
Professor Roger Halliday, chief executive of RDS, said: “Our relationship with the Regional Safe Havens marks a major milestone in RDS’s progress to realise our ambition to enable research projects driven by Scottish public data that improve social wellbeing in Scotland, and attract investment and jobs to our country.”
“We will work towards developing a broader service model where organisations across the partnership bring their expertise in their individual areas of specialty for the benefit of researcher in the public good.”
Professor Shantini Paranjothy, Grampian Data Safe Haven (DaSH) Clinical Lead, said: "The work with Research Data Scotland will see our experience of working with Social Care Data at a local level with colleagues in the City Council, replicated at a National Level and we are excited to be part of this journey."
Katie Wilde, Grampian Data Safe Haven (DaSH) Technical Lead, said: " We are excited to build upon the work already established with the Scottish Federated Network of Data Safe Havens and bring Research Data Scotland into our fold."
Professor Nick Mills, British Heart Foundation Chair of Cardiology and Senior Responsible Officer for Data-Driven Innovation in Health & Social Care at the University of Edinburgh, said: "At DataLoch, we are delighted to formally extend our collaborations with the other Safe Havens in Scotland and RDS. This step renews an important national foundation for the Safe Havens and our shared approach in securely bringing together de-identified health data for research.
“These datasets are the cornerstone for delivering improved frontline services, ultimately enhancing population-wide health and wellbeing, but this goal can only be achieved in close partnerships like this."
Charlie Mayor, Safe Haven Manager, NHS Greater Glasgow and Clyde, said: “NHS Greater Glasgow and Clyde looks forward to being a key partner in this collaboration, which will bring significant benefits to the communities we serve. By improving research projects, we can improve health and social wellbeing through better outcomes which make a positive impact across Scotland.”
Professor Emily Jefferson, Director of the Health Informatics Centre (HIC), Dundee Safe Haven, said: “We are delighted to be a collaborator within RDS. RDS will help us to streamline cross Safe Haven activity and linkage to non-health data. This will enable Scotland to scale and make research more efficient providing faster realisation of the patient and public benefits.”
Over the next six months researchers will benefit from:
• The unique data offering available at each RSH
• Guidance in project mapping
• Guidance on how RSH data can be accessed and linked
• Links to RSH metadata catalogues
• An approval route for RSH data
• Researcher Information Governance requirements for RSH datasets
• Improved transparency for researchers on their project’s progression through the access landscape
Professor Halliday said: “In the future researchers will benefit from the development of shared approaches and policies on public engagement and transparency about what RDS does and who is accessing its services; a simple and seamless process for accessing and linking data for researchers led by information governance will speed up the cycle of data-driven research and innovation and provide a greater range of data services available.”
Meanwhile, RDS will host communication workshops which will champion the use of RSH data in national research programmes, while ensuring the technical infrastructure allows the Scottish safe haven model to fit with other UK initiatives using common data mapping languages.
Other benefits RDS are seeking to deliver long-term include:
• Establishing streamlined secure data transfer processes for non-health data into RSH when required for bespoke research requests
• Developing streamlined secure data transfer procedures between RSH
• Building RDS user journey tools such including a researcher portal and a digital access form for all approvals processes
• Establishing Digital Economy Act (DEA) accreditation for RSH allowing additional data linkage opportunities
• Building on collaborations with industry regarding use of public sector data in machine learning and artificial intelligence