This week the Government published its final version of its data strategy for health and social care in England called Data Saves Lives: Reshaping Health and Social Care with Data. This is almost a year on from when the Government were forced to back down from its proposed General Practice Data for Planning and Research programme after more than 1.5 million people opted out following serious privacy concerns. The strategy acknowledges that the original plan for GPDPR was a mistake and left public trust damaged.
The strategy shows how the Government intends to use data to bring benefits to all parts of health and social care with the ambition of delivering faster and more innovative treatment and diagnosis. Ben Goldacre who led the review published in April 2022 into how the efficient and safe use of health data for research and analysis can benefit patients and the healthcare sector has said “This is a momentous document because it reaches beyond aphorisms and gets into crucial technical detail.”
The core seven principles set out in the strategy are:
- To improve trust in the health and care system’s use of data. Data will only be accessed in ways that are secure and safe by using privacy-enhancing technologies such as secure data environments as the default route for NHS and adult social care organisations to provide access to de-identified data for research and analysis. Analysis takes place within a secure online platform rather than data being shared and distributed. No data that can be linked to an individual can leave the server, and all access to the data and analysis is monitored, which will greatly reduce the risk of data breaches or other misuse.
- To give health and care professionals the information they need to provide the best possible care.
- To improve data for adult social care.
- To support local and national decision-makers with data.
- To empower researchers with data to develop life-changing treatments, diagnostics, models of care and insights.
- To work with partners to develop innovations that improve health and care.
- To develop the right technical infrastructure.
The Government have made various commitments including:-
- Implementing secure data environments as a default across the NHS by December 2022. A form of secure data environment, Trusted Research Environments allow analysts and researchers to undertake in-depth analysis on rich, joined-up datasets without them seeing any identifiable information. They also drive efficiency, because all users working with the same datasets can use common tools for data curation and analysis.
- Establishing a data pact with the public will be established that will set out shared expectations and how health and care data will be used by December 2022
- Developing a national information governance transformation plan, focusing on practical data-sharing situations, creating professional standards and addressing training for frontline staff by December 2022
- Supporting every integrated care system to ensure that all organisations are able to access a shared care record that meets the requirements set out in the standards roadmap, enabling individuals, their approved caregivers and their care team to view and contribute to the record by December 2024.
This strategy is a significant achievement in ensuring the digital transformation of the NHS. It sets out a roadmap to unlock the benefits of using NHS data for research and analysis in a secure, efficient way that better protects patients’ privacy. In order for it to be successfully implemented it will be essential that it is properly resourced and that the public and staff are engaged in implementation.