Dr Ben Goldacre, an academic, doctor and writer known for his attacks on the misuse of statistics, will undertake a rapid review of the use of health data for research and analysis.
His review, reporting in April, aims to complement the government’s work on a data strategy for health and social care. “Ben has a wealth of experience in working with health data and I am delighted he has accepted my invitation to undertake this review,” said health and social care secretary Matt Hancock. “I am looking forward to working with Ben and seeing his recommendations over the coming months.”
The terms of reference include facilitating access to NHS data while preserving patient privacy; avoiding unhelpful monopolies over data access for analysis; what can be learn from the best work in data science, commercial and open source software development; and how the NHS can analyse and use data routinely to improve quality, safety and efficiency.
“The UK has a phenomenal resource in its raw data, and its people,” said Goldacre, who runs Oxford University’s DataLab and whose books include ‘Bad Science’ and ‘Bad Pharma’. “Our challenge is now in the final lap: we need to find safe, secure, collaborative and efficient ways to turn that raw data into insights and action, to improve patient care for all.”
The terms of reference for the review are:
- 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 do we help the NHS to analyse and use data routinely to improve quality, safety and efficiency?