An independent review of public feedback has been conducted to inform the development of Scotland’s inaugural health and social care data strategy, scheduled for release in early 2023. This comprehensive analysis captures a broad spectrum of stakeholder perspectives on how health data should be collected, stored, and utilized, laying the groundwork for a more transparent, integrated, and ethically managed data framework. Engaging with this consultation process enables policymakers to better understand public expectations and concerns, ensuring that future data initiatives align with societal values and technological advancements.
Executive Summary
Introduction
Between 16 May and 12 August 2022, a public consultation was launched to shape Scotland’s first comprehensive Data Strategy for health and social care. This initiative aimed to gather insights from a diverse range of stakeholders—individuals and organizations alike—regarding the collection, management, and application of health-related data. The consultation presented six closed questions and 26 open-ended inquiries, resulting in 162 responses: 62 from individuals and 100 from organizations. The feedback collected will serve as a vital foundation for crafting a strategy that prioritizes ethical data use, security, and public trust, with the final document expected in early 2023.
Part One: Empowering Individuals
A recurring theme throughout the consultation was the importance of transparency and informed consent. Respondents emphasized that they should have clear awareness of what data is being collected about them, how it is stored, and the purposes for which it is used. Providing this information in accessible formats is essential to empower individuals to make informed choices about sharing their data and to foster trust in the system.
Participants generally viewed health and social care data as encompassing personal medical histories, including clinical notes from general practitioners and hospitals, diagnosis records, treatment outcomes, test results, medication histories, and vaccination data. Some also highlighted the significance of personal identifiers such as names, dates of birth, contact details, and emergency contacts. Many expressed a desire to access information that directly influences their care decisions or enables them to manage their conditions more effectively. Conversely, concerns were raised regarding sharing sensitive data such as sexual health, mental health records, or any information that could potentially identify an individual without proper safeguards.
Respondents underscored that clarity on data usage must be maintained through consistent and transparent communication. Explaining what data is collected, how it is stored, who can access it, and the intended purposes are critical steps toward building trust. Enhancing public understanding of data governance, ensuring high-quality data collection, and training staff in data literacy were identified as key strategies. For individuals unable to manage their own data—such as those under guardianship—existing legal protections like Power of Attorney or Guardianship should serve as models for safeguarding their information.
There was strong support for using data to better understand and support individuals with protected characteristics. Moreover, respondents broadly endorsed the idea of leveraging health data for research, innovation, performance management, and service improvement efforts. Regarding wearable technology, many recognized its potential benefits in monitoring health conditions and enabling early interventions; however, some questioned the reliability of data obtained from consumer-grade devices.
Part Two: Enhancing Data Use for Care Providers
Key findings highlighted the need for interoperable systems, standardized data formats, and linked datasets to improve accuracy and accessibility across services. Such improvements would facilitate a more cohesive, scalable, and flexible approach to delivering quality care. Investment in training health and social care practitioners was also deemed crucial to enhance their understanding of data processing, governance, and ethics.
Respondents identified the critical skills gap as understanding existing data repositories and knowing how to access relevant information. They emphasized that investing in resources for training staff in data literacy, security, and GDPR compliance would significantly boost confidence in data handling. Designing user-friendly interfaces and involving service users in system development were also suggested to improve accessibility and usability. Addressing digital exclusion remains vital; digital tools should complement, not replace, traditional methods to prevent further disparities.
The consultation showed broad support for establishing national standards for data collection, storage, and access. Implementing uniform terminology, coding systems, and governance frameworks would promote consistency and facilitate interoperability. Many advocated for a centralized, interoperable data hub—sometimes referred to as a “digital front door”—that integrates legacy systems and employs a unique identifier, such as the Community Health Index (CHI) number, to link data accurately across organizations. Such infrastructure would support comprehensive insights into service demand, capacity, and outcomes.
Respondents also saw value in integrating external datasets, including housing information, socio-economic data, and data from wearable devices. These enriched datasets could enable a holistic understanding of service users, leading to improved outcomes through more tailored interventions. Priorities include better operational data (e.g., demand, capacity, activity), workforce metrics, and patient outcome data, especially concerning protected characteristics.
Part Three: Supporting Innovation, Industry, and Research
There was widespread backing for the ethical use of anonymized data to foster medical breakthroughs, evaluate interventions, and inform policy. Nonetheless, concerns about commercial exploitation persisted, especially regarding private companies accessing or selling data for profit. Many respondents emphasized that data sharing should adhere to strict ethical standards, with safeguards such as secure environments (trusted research spaces) and international interoperability standards.
Data sharing with industry and innovators can accelerate health advancements, but transparency is essential to maintain public trust. Clear communication about data use, strict adherence to data protection laws, and limiting access to non-identifiable, aggregated information are key measures to foster confidence. Respondents suggested establishing a robust infrastructure—potentially involving cloud storage, safe havens, and independent audits—to support research while safeguarding data integrity.
The potential for artificial intelligence (AI) to revolutionize health and social care received mixed responses. While many acknowledged AI’s promise in enabling earlier diagnoses, personalized treatment, and resource optimization, others emphasized the importance of governance, oversight, and bias mitigation. Ensuring AI applications comply with ethical standards and involve human oversight will be vital to realizing their benefits responsibly.
Conclusions
The insights gathered through this extensive consultation process reflect a shared desire for a data framework that prioritizes transparency, security, and ethical use. Their perspectives will be instrumental in shaping Scotland’s first comprehensive Data Strategy for health and social care, helping to build a system that leverages data to improve outcomes while respecting individual rights and fostering public trust.
Contact
Email: DHCPolicyHub@gov.scot
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