The review will complement the forthcoming national Data Strategy for Health and Social Care which will set the direction for the use of data in a post-pandemic healthcare system.
The UK Secretary of State for Health and Social Care has asked Dr Ben Goldacre, who is supported by ARC OxTV through it's Digital Health research theme, to undertake this rapid review and report his findings in April 2021
Rt Hon. Matt Hancock MP, Secretary of State for Health and Social Care, said: “Ensuring that researchers have ethical, secure and transparent access to health data has the potential to transform health and care.
“Ben has a wealth of experience in working with health data and I am delighted that he has accepted my invitation to undertake this review. I am looking forward to hearing his recommendations over the coming months.”
Dr Ben Goldacre, Director of The DataLab in the University of Oxford's Nuffield Department of Primary Care Health Sciences, said: “The UK has a phenomenal resource in its raw data, and its people. 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. There is a wealth of expertise around the country, much of it untapped. I’m excited to talk to people across health, social care and research about their experiences and concerns to help drive better, broader, safe use of health data. ”
If you would like to get in touch about the review or share your experience of using health data for research, please contact firstname.lastname@example.org
TERMS OF REFERENCE FOR THE REVIEW
- 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?