ALLIANCE responds to Data Strategy for Health and Social Care
- Area of Work: The ALLIANCE
- Type: News Item
- Published: 12th August 2022
The response calls for principles of human rights, trust, and transparency to be at the heart of the new strategy.
The ALLIANCE has responded to the Scottish Government’s consultation on a Data Strategy for Health and Social Care (this link will take you away from our website).
The development of Scotland’s first ever dedicated Data Strategy for Health and Social Care presents an opportunity for Scotland to become a world leader by building the infrastructure to allow people to have more choice and control over their data.
Our response is informed by consultation and engagement with our members and partners on digital health and social care policy and practice across Scotland.
Our key points and recommendations are summarised below:
- People should have full access and control to their own health and social care records to enable person centred care, greater collaboration, and ensure informed consent is in place.
- People should have the fundamental right to contribute information to their personal records.
- People should have options to allow or withdraw access to individual data.
- Where access is delegated to a trusted information, robust safeguards must be in place to mitigate risks of harm and to prevent decisions being made that would go against a person’s will and preference.
- Information on how data is being used should be clearly communicated to the public in multiple accessible formats, and following principles of inclusive communication.
- Public bodies should conduct systematic and robust data gathering on health and social care, disaggregated by protected characteristics and characteristics of other marginalised groups.
- To improve trust in how data is used, education, transparency, clarity and principles of choice and control should be embedded across digital systems.
You can read our full response via the links below.
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