Transparency in health and social care

New Guidance Released for Health and Social Care Organisations on Data Protection Transparency

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The Information Commissioner’s Office (ICO) has published new guidance aimed at enhancing transparency in using personal information within health and social care sectors. This guidance is important for organisations that handle health and social care data, ensuring they comply with the Data Protection Act 2018 and UK GDPR.

Key Points of the Guidance:

  • Transparency Principle: Central to the Data Protection Act 2018, transparency ensures that individuals are aware of how their personal information is used, enabling them to make informed decisions and exercise their rights effectively.
  • Role of Transparency: Clear information about personal data usage builds trust and confidence among service users, which is particularly significant in health and social care settings where new technologies and large data usages are prevalent.
  • Target Audience: The guidance is designed for any organisation involved in delivering health and social care services. This includes local governments, private and third-sector organisations, universities conducting health research, and other public services utilising health data.

Developing Effective Transparency Materials: Organisations are encouraged to develop materials that clearly explain their data processing activities. The guidance stresses the importance of using plain language to ensure understanding and accessibility.

Legal Requirements vs. Good Practice:

  • Must: Actions required by law under DPA 2018 and UK GDPR.
  • Should: Recommended best practices that organisations are expected to follow unless a valid reason exists for an alternative approach.
  • Could: Suggested actions that organisations may consider to enhance compliance.

The ICO advises all entities involved in health and social care data processing to familiarise themselves with this new guidance, which supplements existing ICO guidelines on transparency, the right to be informed, and the use of clear language.

Impact on Organisations: The guidance holds particular relevance for large-scale activities, such as implementing new data collection tools for research, setting up shared care records, or introducing new health technology applications. Smaller entities, like GP practices updating privacy notices, might find the guidance less burdensome but equally important.

For further details, organisations should refer to the full document available on the ICO website, which includes additional resources, such as a glossary of terms and links to further reading materials.

About ICO: The Information Commissioner’s Office is the UK’s independent authority set up to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals.

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