Health and social care - data strategy: consultation analysis

Conclusions

Many individuals and stakeholders with detailed knowledge took part in the consultation, sharing their views on how health and social care data could be gathered, stored and used. Their views will provide a useful evidence base to draw on when shaping Scotland's first Data Strategy for health and social care. This report provides a high-level summary of the consultation responses; for more detail, readers are encouraged to look to individual responses where permission was given for publication^[9].

Health and social care data was perceived to cover a wide range of information, including data collected by individuals themselves. There were calls for the strategy to include a clear definition, and for steps to be taken to improve public awareness of how health and social care data is being used effectively and how this benefits individuals and the public.

There was broad agreement that individuals should be made aware of what data is collected from and about them, how it is stored, what their data is used for, and by whom. Transparency and consent were recurring themes and respondents stressed the importance of providing this information in clear and accessible formats, and of compliance with data protection regulations and ethical codes of conduct. Ensuring only relevant data is shared or being able to consent to sharing on a case-by-case basis was also requested.

To empower practitioners, respondents supported investment in training to give them a better understanding of data processing, the value of data in health and social care, and of governance and ethics. Respondents highlighted the need for user-friendly platforms, interoperable systems, linked data and data standards to improve the accuracy, completeness, consistency and accessibility of data. These would allow for a joined-up approach that is scalable and flexible across services and lead to better quality services. The value of operational data and data about protected characteristics was also noted.

Many suggested collaboration with staff in health and social care, service users, academia, third sector service providers, and private sector experts to create an effective end-to-end system, but there were concerns about the quality of existing data and the barriers created by data silos and staff anxiety over data sharing.

Respondents largely supported industry, innovators and researchers accessing anonymised population data to help drive medical advancements, evaluate the impact of health and social care interventions and shape future policy and planning. There was, however, repeated opposition from some to data being shared or sold to private organisations for commercial gain or for activities which are not in the public interest.

The use of safe havens and trusted research environments, international standards and interoperability were seen as vital to sharing data for research purposes. Respondents highlighted challenges around the disparate nature of existing data sets and expressed mixed views on how easily data should be accessible. Many reflected on how Artificial Intelligence could improve diagnostics and efficiency but stressed it must be used in line with all relevant regulations, with human oversight, and that any bias is addressed.