The Department of Health and Social Care (DHSC) has recently published Better, Broader, Safer – Professor Ben Goldacre’s review into how the efficient and safe use of health data for research and analysis can benefit patients and the healthcare sector.
The review was tasked with finding ways to deliver better, broader and safer use of NHS data for analysis and research. It sets out a practical vision of how health data, when managed correctly, can be used to discover which treatments work best, monitor and improve the quality, safety and efficiency of health services, and drive innovation across the life sciences sector.
The review concluded that many shortcomings in the system have been driven by a ‘destructive impatience’: constantly chasing small, isolated, short-term projects, at the expense of building a coherent system that can deliver faster, better and safer outputs for all users of data. It found that if there is investment in platforms and curation, alongside a robust engagement with the technical challenges, then there can be rapid capitalisation of skills and data. In turn, it is predicted that the speed and productivity of health research will rocket and lives will be saved.
“Seventy-three years of complete NHS patient records contain all the noise from millions of lifetimes. Perfect, subtle signals can be coaxed from this data, and those signals go far beyond mere academic curiosity. They represent deeply buried treasure that can help prevent suffering and death around the planet on a biblical scale. It is our collective duty to make this work.” – Professor Ben Goldacre
Recommendations
At 112 pages the report is unashamedly long and technical, but for good reason, recognising that the challenges are technical and cannot be wished away. The review distils 185 wide-ranging recommendations into 30 summary recommendations to the DHSC, which focus on:
- Platforms and security:
- Build trust by improving on privacy and transparency actions and tools
- Acknowledge the shortcomings of outdated techniques to manage patient privacy
- Build a small number of secure analytics platforms with enhanced privacy protections – shared Trusted Research Environments (TREs)
- Make TREs the norm for analysis of NHS patient records, streamlining processes, driving collaborative approaches to data science and publishing logs to build public trust
- Modern, open working methods for NHS data:
- Promote and resource Reproducible Analytical Pathways (RAPs) as the minimum standard for academic and NHS data analysis
- Recognise software development as a central feature of all good work with data and bridge the gap between software development and health research
- Note the difference between open code and open data
- Data curation and knowledge management:
- Standardise data curation methods with devoted teams, shared working practices, shared code, shared tools, and shared documentation
- Use TREs as an opportunity to impose standards on the storage of commonly used datasets and curation into analysis-ready tables
- Create an open online library for NHS data curation code, validity tests, and technical documentation
- NHS Data Analysts:
- Create an NHS Analyst Service modelled on the Government Economic Service and Statistical Service
- Embrace modern, open working methods for NHS data analysis
- Create an Open College for NHS Analysts for initial training and CPD
- Create and maintain a curated national open library of NHS analyst code and methods
- Seek expert help from academia and industry, but ensure all code and technical documentation is openly available to all
- Train senior non-analysts and leaders in how to be good customers of data teams
- Governance:
- Rationalise approvals: create one map of all approval processes
- Have a frank public conversation about commercial use of NHS data for innovation, once privacy issues are addressed through TREs
- Develop clear rules around the use of NHS patient records on performance management of NHS organisations
- Address the problem of 160 trusts and 6,5000 GPs acting as separate data controllers
- Approaches and strategy:
- Use people with technical skills to manage complex technical problems
- Build skills and prove the value of modern approaches to data
- Identify a range of ’data pioneer’ groups
- Build TRE capacity by taking a hands-on approach to the components of work common to all TREs
- Focus on platforms by resourcing teams, services and institutions who are focused solely on facilitating great analytic work by other people, working closely with users
Commentary
There is a lot to digest and reflect upon within the report, which refreshingly takes a holistic view of the complex blend of practical, technical, economic, policy, ethical and legal issues affecting health research and current systems and approaches (rather than approaching the problem from just one perspective).
Of particular interest from a legal perspective is that whilst the review acknowledges that data protection laws are often given as an excuse for an overly cautious and protectionist approach to use of health data for research, legal reforms are not specifically singled out as a recommendation. This is despite the government’s consultation on reforms to data protection law, which amongst other things sought views on simplifying and freeing up use of data in scientific research, in light of perceived barriers in the legislation (see our previous coverage here).
Some of the principles underpinning the recommendations can be acted upon right away and are already reflected in existing or draft strategy, guidance and policies. DHSC has already announced up to £200 million to invest in the development of Trusted Research Environments (TREs) and digitally enabled clinical trials. However, implementation of many of the recommendations will require an overhaul of established ways of working at national, system and organisational levels, when legal reforms under the Health and Care Bill are already underway. Therefore, whilst introducing new ways of working is urgently overdue, their implementation rests on a clear response and strategy from the centre, and implementation will need to be an incremental and transitional process.
DHSC is expected to publish the final version of its NHS data strategy, Data Saves Lives, imminently, which will include its response to the recommendations and, hopefully, set out a clear roadmap for these recommendations to become reality.The Department of Health and Social Care, Better, Broader, Safer.
For further information, please contact:
Richard Parker, Hill Dickinson
richard.parker@hilldickinson.com
