Transparency in Health and Social Care: New ICO Guidance 

Within the health and social care sector, new technologies that use large amounts of personal data are being used to support both direct care and secondary purposes, such as planning and research. An example is the the use of AI to provide automated diagnoses based on medical imaging data from patients. 

Transparency is a key principle of UK Data Protection legislation. Compliance with the first data protection principle and Article 13 and 14 of the UK GDPR ensures that data subjects are aware of how their personal data is used, allowing them to make informed choices about who they disclose their data to and how to exercise their data rights. 

On Monday the Information Commissioner’s Office (ICO) published new guidance to assist health and social care organisations to comply with their transparency obligations under the UK GDPR. It supplements existing ICO guidance on the principle of transparency and the right to be informed

The guidance is aimed at all organisations, including from the private and third sector, who deliver health and social care services or process health and social care information. This includes local authorities, suppliers to the health and social care sector, universities using health information for research purposes and others (e.g. fire service, police and education) that use health information for their own purposes. The guidance will help them to understand the definition of transparency and assess appropriate levels of transparency, as well as providing practical steps to developing effective transparency information. 

This and other data protection developments will be discussed by Robert Bateman in our forthcoming GDPR Update workshop. We have also just launched our new workshop, Understanding GDPR Accountability and Conducting Data Protection Audits.   

The WhatsApp GDPR Fine 

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On 2nd September, the instant messaging service WhatsApp was fined €225 million by the Irish Data Protection Commission (DPC) under GDPR. It is the largest fine issued by the DPC and the second highest in the EU (In July Luxembourg’s National Commission for Data Protection fined Amazon €746 million after finding that the way the e-commerce giant handles people’s personal data, especially around personalised ads, was not GDPR compliant).

The background to the WhatsApp fine is an investigation by the DPC, which started in December 2018. WhatsApp users are required to provide the company with all their contacts’ phone numbers. Some of these will inevitably belong to non-WhatsApp users.
The DPC found that these numbers were also personal data because the subjects were identifiable and consequently WhatsApp was the data controller in relation to such data.

The DPC then evaluated WhatsApp’s compliance with the transparency obligations set out in Articles 14 and 12(1) of GDPR. WhatsApp argued that it took “appropriate measures” to inform non-users of the “very limited ways” in which it processed their personal data.
This was supposedly done by stating users provide the company with all their contacts’ phone numbers in their privacy policy. 

The DPC rejected this argument, pointing to the lack of a discoverable and accessible “public notice” that would provide non-users of WhatsApp services with the information they are entitled to under Article 14. For example, they should be provided with details about the “circumstances in which any non-user personal data is shared with any of the Facebook Companies”(Facebook bought WhatsApp in 2014). It emphasised that the burden of providing such information is outweighed by “the role and utility of the right to be informed”.

The DPC also ruled that WhatsApp had not complied with Article 13 in relation to the privacy information it provided to users. It specifically assessed the extent to which WhatsApp explained its relationship with the Facebook companies and any consequent sharing of data. It criticised the manner in which the information is spread out “across a wide range of texts”, and how a significant amount of it is so high level as to be meaningless. It pointed out how the Facebook FAQ is only linked to WhatsApp’s privacy policy in one place. The information being provided was “unnecessarily confusing and ill-defined”. 

In addition to the fine, the DPC has also imposed a formal reprimand (under GDPR Art. 58(2)(b)) along with an order (under GDPR Art. 58(2)(d)) for WhatsApp to bring its processing into compliance by taking a eight specified remedial actions.  WhatsApp has 3 months to comply. One of the remedial actions is to remind users of their GDPR rights which will lead to substantially more work for WhatsApp in meeting these requests.

Data Controllers need to assess how well their privacy policies and notices comply with Article 13 and 14. This cases shows that regulators are willing to enforce GDPR transparency obligations on data controllers even where the obligations are difficult to meet because, like WhatsApp, they have millions of non-service user data subjects with whom there is no direct relationship.

WhatsApp has confirmed that it will appeal the decision. 

Most of our courses are now available as both classroom and online options. The GDPR Practitioner Certificate is our most popular certificate course with may courses filling up fast. We have added more dates.