Academy responds to the consultation on data security, consent and opt-outs

The Academy responded last week to the Department of Health’s consultation on the National Data Guardian for Health and Care’s Review of data security, consent and opt-outs.

We welcome this positive step towards establishing a robust governance model for sharing healthcare data in the UK, which must continue to support and enhance the UK’s outstanding research base. The Academy's response, which can be downloaded from the righthand side of the page, details some important considerations for implementing a healthcare data governance model in the UK, including:

• The importance of building transparency and trust around data sharing. It is essential to communicate the significant benefits from sharing health data to support patients in making an informed choice about sharing personal data, and to create an understanding of where, and why, healthcare data might be used.
• Ensuring that research is accurately presented as core to the running of the healthcare system and provision of care.
• The need for clarity around the terminology for different data types.
• Clarity on the implementation and interpretation of opt-outs, with appropriate timelines in place to allow for development and refinement of the data governance model in discussion with all stakeholders. The involvement of the academic research community in the development and implementation of this model, as well as other stakeholders, is critical to ensuring successful implementation and adoption.

We will continue to engage with the Department of Health on the new governance model for data security, consent and opt-outs, to ensure that we maintain our world-leading research ecosystem in the UK.