NHS Tayside Primary Care data use in East of Scotland Research Node

NHS Tayside Primary Care data use in East of Scotland Research Node

 

 

Purpose: To support GP practices in understanding the context, providing reassurance and confidence in our key role, and to seek approval for regional Primary Care data contribution for public benefit, research & innovation, with no operational impact on general practice.

 

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1. National Policy & Strategic Driver (Scotland)

Scotland’s first dedicated Data Strategy for Health and Social Care, “Greater access, better insight, improved outcomes: a strategy for data-driven care in the digital age”, sets out a national vision that data should be used securely and ethically to drive improved health and care outcomes. The strategy for Scotland emphasises:

  • the need for trusted and secure access to health and social care data.

  • supporting research and innovation through safe access to data.

  • Scottish Data Safe Havens, who are noted in the Data Strategy for Health and Social Care, specifically in the 2025 Update (Research and Innovation section). The Safe Haven network also operates under the Scottish Government Safe Haven Charter established in 2015.

  • using data to inform policy, planning and patient outcome improvements.

  • improvements to the speed and ease with which researchers can access data.

  • the Chief Scientists Office (CSO) strategy for all regional Safe Haven nodes in Scotland to ensure access to Primary and Secondary care data for research and innovation for the benefit of Scotland and its population. HIC is the East of Scotland node.

As part of delivering these national ambitions, regional Safe Havens have long been established (HIC established in 2004 for NHS Tayside) to allow protected use of NHS data for public benefit within a highly controlled environment.

 

2. Why Regional Primary Care Data Matters

Primary Care data are fundamental to understanding population health and service needs. This data contains rich clinical information that is not consistently captured in secondary care settings. This includes encoded diagnosis data and vital measures such as height, weight, and blood pressure recorded routinely in primary care. These data are essential for building a detailed and more complete picture of a patient’s history, understanding disease risk, monitoring population health, and supporting high quality analytics that cannot be achieved using secondary care data alone. Regular, structured data flows from practices into HIC will support:

  • Population health research benefiting patients throughout Tayside and beyond.

  • Enhanced insight into health inequalities and service outcomes.

  • Improved identification of patients who may be eligible for retrospective research and clinical trials enabling more inclusive and targeted research recruitment.

  • Potential for engagement in regional health intelligence dashboards supporting GP Practices tailored to NHS Tayside Primary Care needs (e.g., disease prevalence, prescribing trends, service utilisation).

 

3. What Is the Health Informatics Centre (HIC)?

HIC is the East of Scotland, Regional Safe Haven hosted at Ninewells Hospital by University of Dundee to cover NHS Tayside, NHS Fife and NHS Forth Valley offering secure, controlled access to sensitive health data under strict governance frameworks as laid out by Scottish Government. The HIC Safe Haven:

  • work in accordance with NHS Tayside Information Governance, who are a core part in our governance and in respect of Primary Care data feeds are in support of HIC Safe Haven being utilised in providing this facility to researchers.

  • have hosted and managing NHS population data for research, audit and service improvement for over 20 years. We host over 30 years’ worth of both secondary care datasets and primary care prescribing. We also have extensive experience with consented projects specifically primary care data extractions.

  • operates completely within ISO 27001-accredition, with robust governance, data protection and audit controls.

  • were Scotland’s first established regional Safe Haven, which forms part of the Scottish Safe Haven Network (SSHN) designed to safely enable analyses that benefit health and care.

 

4. Which Data Are Shared & Practice Impact

  • There is no operational workload or resource requirement for GP practice staff. This is a direct digital feed from existing secure NHS systems with no ongoing manual input.

  • Data will be extracted directly from the Primary Care system using an established automated process created by Albasoft. This technical process is already tested, established and working. HIC have used this secure method for consented extracts over the last decade.

  • Identifiable data is securely stored only within the NHS network with HIC role-based access employed to ensure data protection.

  • Robust data pseudonymisation and data minimisation techniques are applied to data prior to any researcher access.

  • Researchers work under an access-only model under the control of HIC, using a remote access secure platform, our Trusted Research Environment (TRE).

  • These data are used in accordance with safeguards and ethical approvals consistent with Scottish Government Safe Haven practices in the utilisation of unconsented data for research. The Scottish Government Safe Haven network operates under the Safe Haven Charter established in 2015 providing established and secure Safe Havens for supporting the secure access to data for research at a population scale. This established research network, governance and research provision from HIC operates under the data control of the NHS Tayside health board for NHS Tayside data in line with existing governance.

  • Data controllership for primary care data transferred to HIC remains under the joint controllership agreement between GP Practices and NHS Tayside health board, HIC act as a data processor for the purpose of research. This mirrors the arrangement in place for secondary care data, as agreed with the health board Data Protection Officer and Medical Director.

  • This model follows a similar route used by the Clinical Practice Research Datalink, (CPRD) but is focused on regional access and benefit in Tayside.

 

5. Public Benefit & Transparency

HIC is committed to ensuring that all data use has public benefit and is conducted in an open and transparent manner. Key principles and safeguards include:

  • In Scotland, health and care data may be used for research under legal and ethical frameworks, with individual control maintained through independent review and governance using the GDRP legal basis of public task.

  • Scotland does not participate in the NHS England National Data Opt-Out (NDOO) scheme, which applies only within NHS England.

  • All data access must clearly demonstrate public interest and public benefit. Decision-making incorporates public participation and follows principles such as “do no harm,” a precautionary approach, and fair benefit sharing.

  • HIC publishes all projects that use data through its public project registry and the public to see which data are being used and for what purpose.

  • HIC provides regular updates to our online registry on research outputs, including publications, reports, and improvements to care, so practices and the public can understand the significant value and impact of work facilitated via HIC.

  • Strong governance ensures accountability and responsible use of these data. National oversight is provided through reporting to the Scottish Government’s Health and Social Care Board, and the local NHS health board, while regional oversight is provided by the HIC Strategic Board, which includes, key stakeholders from primary and secondary care, researchers, information governance and public representation.

6. Security, Privacy & Governance

Our approach aligns with the Five Safes framework (Safe People, Safe Projects, Safe Data, Safe Settings and Safe Outputs). Key safeguards include:

  • accredited ISO 27001 Information Security Management System.

  • identifiable data is all held securely within the NHS network.

  • controlled access to data only provided through the robust governance frameworks in partnership with NHS Tayside (R&D, research ethics and Caldicott governance approvals).

  • comprehensive audit and oversight mechanisms to ensure compliance and accountability and protection of individual rights under GDPR.

  • compliance with the UK General Data Protection Regulation (GDPR) and the Data Protection Act 2018, ensuring personal data are processed lawfully, fairly, and transparently, with strong safeguards including anonymisation and pseudonymisation wherever possible.

 

7. Benefits to Patients & Practices

Patients benefit when health data are used responsibly. Better quality data increases the impact and benefit, providing wider primary care data from across the Tayside region for linking with secondary care data builds a stronger, more accurate picture of a patient’s healthcare.

  • Supporting research and innovation into disease, treatment and prevention.

  • Enabling targeted interventions for areas of unmet need.

  • Clinical trial recruitment. With appropriate governance approval patients can be more accurately identified and contacted by clinicians for consideration and recruitment into clinical trials for novel and innovative medicines and newly developed processes. e.g. vaccines, weight loss drugs, cancer treatments.

  • Practices can benefit from regional insights into population health and locally relevant analytics that are otherwise difficult to generate e.g. dashboards, metrics for summary information, data comparisons, trends in coordination with HIC data expertise, and potentially combining secondary care data.

  • Engagement with HIC Safe Haven for secure research purposes and GP community representation on our strategy and governance board as a direct voice for primary care data. This meets formally every second month throughout the year and includes public involvement engagement representatives.

  • Practices can engage in research and innovation activities with the Safe Haven as part of the Scottish Government network providing:

    • Better understanding of local population health needs

    • Improved evidence for service development and funding.

    • Insight into inequalities and unmet need.

    • Potential access to intelligence dashboards.

    • High-quality research that benefits Tayside patients.

 

8. Practice Agreement for NHS Tayside Safe Haven use

By agreeing, the practice allows the Health Informatics Centre (HIC) Regional Safe Haven for NHS Tayside to host and provision primary care data to enable research & innovation as described above.

HIC will set up routine data feed transfers of Primary Care data, via Albasoft, with no practice involvement or resource required. HIC will ensure transparency by sharing with you annually a list of research outcomes that have benefitted from these data. HIC will include this access to Primary Care data in our annually renewed NHS Tayside Caldicott approval, as per our Secondary Care datasets. Practices can withdraw from these transfers at any time by contacting us.

This decision and support provide for improved strength and coordination in Scotland to be able to translate research into practice inclusive of integrated primary and secondary care data for the benefit of the population.

To agree, please complete this brief form: NHS Tayside Primary Care data use in East of Scotland Node, Health Informatics Centre (HIC)

 

For additional information on HIC, and our operating model, please visit our website: https://www.dundee.ac.uk/hic. If you have any questions or would like further discussion, please do not hesitate to reach out to us by contacting: hicsupport@dundee.ac.uk

Thank you for your continued support in helping develop high-quality, evidence-based primary care services in Tayside.

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