The Information Commissioner’s Office (ICO) has launched a consultation on its draft transparency guidance for health and social care organisations. The eight-week consultation will be of interest to information governance staff working in health and care organisations, data protection officers and those developing new technological solutions. Although the transparency guidance is aimed at public sector organisations it will be of interest to the independent sector and the third sector organisations delivering health and care services.
The draft guidance notes that transparency is a key principle of the Data Protection Act 2018 and the UK GDPR and ensures that people are aware how their information is used.
The guidance has been developed to support health and social care organisations understand the regulator’s expectations about transparency. It supplements the ICO’s existing guidance on the principle of transparency and the right to be informed. That guidance provides more detail on general transparency requirements.
Transparency in health and social care is important given the sectors routinely handle information about the most personal aspects of a person’s health and personal life. Within the sector new technologies that use large amounts of personal information are being developed to support both direct care and secondary care purposes, such as planning and research. The ICO explain that an example of this is the use of Trusted Research Environments (TREs). TREs are secure environments that provide remote access to health information in de-identified states that protect people’s privacy. While TREs offer benefits to the public, the ICO sate that they “must clearly explain them to people to increase trust and to comply with data protection requirements” – although this is the case for all uses of personal information across health and social care settings.
You can read the draft transparency guidance here and respond to the consultation here – and by 7 January 2023.