On 16 December 2021, the Science and Technology Committee released a call for evidence on the right to privacy in digital data. As the UK’s national institute for health data science, we have today submitted our response to the call.
Key points from our response include:
- The world is on the cusp of a data revolution in biomedical research and health and care design and delivery. We are already witnessing the value and transformative impact that data can have on our health and lives and the UK is well positioned to make a distinctive contribution to global health data science.
- Large-scale linkage and analysis of health-relevant data, across organisational and sovereign boundaries, is vital to deliver insights which can help address not only pandemic recovery but also the social and economic security of the global population.
- To fully realise the benefits of health data research at scale, we must create an ecosystem that includes all custodians of health-relevant data including government, industry, charities, universities and research institutions. This data ecosystem, if successfully convened and coordinated, will act as the foundation for a new era of health data science to advance the discovery and practice of medicine and care.
- Demonstrating trustworthiness in the safe, secure and innovative use of data is vital to achieve this ambition. The apparent high levels of public distrust warrant the need for secure regulatory standards and transparency over the uses and sharing of medical data. This will require not only open, transparent public dialogue but also meaningful public involvement in the design and development of data initiatives.
- HDR UK is committed to an approach to data access for research based primarily around the five safes framework.[i] This endorses the use of Trusted Research Environments (TREs) which are secure computing environments that provide remote access to health data and support the highest standards of information governance, transparency and security by removing the need for data to be physically shared between different users. Promotion of the five safes framework will enable the right to privacy whilst unlocking the power of data.
- Information governance processes are currently a significant barrier to wider access to and linkage of health data. Processes for accessing health data vary by custodian and are often slow and challenging to navigate. Simplifying and streamlining these processes, including a single approach to the scrutiny of requests across multiple data controllers, has the potential to dramatically speed up data access and enable data linkage in a way that is transformational for the health data research community and patients.
- Clear, specific guidance from the Information Commissioners Office (ICO) stressing that the re-use of health data sets for research purposes is lawful, subject to relevant considerations and safeguards, would assist in building the confidence of data custodians in trustworthy data sharing.
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