Data transparency and the health and social care sector
Transparency in the health and social care sector is vital for building trust and ensuring the ethical use of sensitive data. In April 2024, the Information Commissioner’s Office (ICO) published guidance to help organisations within the sector understand and effectively implement their transparency obligations. Transparency is not just a regulatory requirement but a fundamental principle that supports innovation and improves healthcare outcomes.
The General Data Protection Regulation (GDPR) mentions transparency only a few times, but it is a key (and often overlooked) element of the first Data Protection Principle.
The GDPR does not provide detail on how to achieve transparency – a gap addressed by the ICO’s sector-specific guidance, which offers practical advice tailored to the health and social care context.
What is it to be transparent?
Transparency in health and social care involves clear communication about how patient and service user personal data is collected, used, and protected. Given the sensitive and wide-scale nature of health and social care data (as there are records for most of the population) compliance is achieved by using a variety of transparency materials, tailored to the needs of their audience(s). The ICO’s guidance highlights the need for clear, accessible information to help individuals make informed decisions about their data.
Challenges for providers
One of the main challenges facing health and social care providers is the lack of understanding among the public about how their data is used. Misunderstandings can lead to mistrust and reluctance to share information, which in turn can hamper medical research and delay the development of new treatments.
The development of appropriate transparency materials can also be difficult. Different sections of the population need different messaging. Children and those with reading or comprehension difficulties may need pictorial, story or video-based information. Some demographic groups may require materials in different languages.
A further challenge is in the delivery of transparency information, including timing. The goal is to make this information easily accessible by relevant individuals, as well as understandable. Options for delivery of transparency information include websites, posters, leaflets, emails, letters, social media, and SMS.
ICO expectations
The ICO’s guidance, developed through public consultation, recognises the potential harms cause by a lack of transparency. For example, if people are not adequately informed, they may refuse consent for data processing, both affecting their own treatment and limiting the availability of research data. Transparency, when done properly, helps address these challenges
The ICO’s position is that transparency efforts should match the scale of an organisation’s data processing and data-associated risks. This can mean a heavy burden on small entities that nonetheless carry out a lot of processing. To alleviate some of the burden, smaller entities should look to templates developed by others, to ensure they meet transparency requirements without overextending their resources.
Patient and service user engagement is also promoted by the ICO. Engaging with patients will help you to determine the most effective communication methods, identify which messages resonate best, and ensure that your transparency efforts are effective.