On February 9, 2021, the UK Government’s Department for Health and Social Care (“DHSC”) announced a review into the efficient and safe use of health data for research and analysis for the benefit of patients in the health sector (“Review”). The DHSC encourages stakeholder feedback in the context of the Review, and will be of particular interest to organisations that have, or seek to have, access to NHS patient data for research purposes.
The Review will be conducted Dr Ben Goldacre, Director of the DataLab at the University of Oxford, and is intended to complement the DHSC’s upcoming “Data Strategy for Health and Social Care” to guide the post-pandemic healthcare system in terms of data use.
The Review is structured around the following twelve questions:
- How do we facilitate access to NHS data by researchers, commissioners, and innovators, while preserving patient privacy?
- What types of technical platforms, trusted research environments, and data flows are the most efficient, and safe, for which common analytic tasks?
- How do we overcome the technical and cultural barriers to achieving this goal, and how can they be rapidly overcome?
- Where (with appropriate sensitivity) have current approaches been successful, and where have they struggled?
- How do we avoid unhelpful monopolies being asserted over data access for analysis?
- What are the right responsibilities and expectations on open and transparent sharing of data and code for arm’s length bodies, clinicians, researchers, research funders, electronic health records and other software vendors, providers of medical services, and innovators? And how do we ensure these are met?
- How can we best incentivise and resource practically useful data science by the public and private sectors? What roles must the state perform, and which are best delivered through a mixed economy? How can we ensure true delivery is rewarded?
- How significantly do the issues of data quality, completeness, and harmonisation across the system affect the range of research uses of the data available from health and social care? Given the current quality issues, what research is the UK optimally placed to support now, and what changes would be needed to optimise our position in the next 3 years?
- If data is made available for secondary research, for example to a company developing new treatments, then how can we prove to patients that privacy is preserved, beyond simple reassurance?
- How can data curation best be delivered, cost effectively, to meet these researchers’ needs? We will ensure alignment with Science Research and Evidence (SRE) research priorities and Office for Life Sciences (OLS) (including the data curation programme bid).
- What can we take from the successes and best practice in data science, commercial, and open source software development communities?
- How can we help the NHS to analyse and use data routinely to improve quality, safety and efficiency?
Stakeholders are encouraged to share their experiences of using health data for research by contacting firstname.lastname@example.org. No deadline for providing feedback is expressly given, although it is stated that a report on findings of the Review is to be presented in April.
The team at Covington will continue to monitor developments.