- In June 2021, the government published a draft data strategy for health and social care. The strategy sets out the government’s vision for how data will be used to improve the health and care of the population in a safe, trusted and transparent way. A final version of the strategy is expected to be published in spring/summer 2022.
- Four months earlier, the government launched an independent review into the use of health data for research and analysis, led by Dr Ben Goldacre. Expected to report in April 2022, the Goldacre Review will make recommendations on improvements to better support the efficient and safe use of health data for research and analysis for the benefit of patients and the healthcare sector.
- This report sets out the key issues we would like to see addressed in the Goldacre Review and data strategy, two key publications intended to modernise the health and care sector. It explores NHS leaders’ views on data infrastructure, data interoperability, data quality, data management, data access, and trust and transparency.
- Over the last two years the NHS has been empowered to innovate at pace, developing revolutionary technology and innovative treatments in response to the COVID-19 pandemic. The Goldacre Review and data strategy should support and build on these hard-won gains, setting the direction for the use of data in a post-pandemic healthcare system.
- To stand the best chance of achieving lasting improvements, NHS leaders will need to be actively involved in the implementation of the report and strategy recommendations. It would be a mistake to impose the recommendations from the top down.
In February 2021, the government launched an independent review into the use of health data for research and analysis led by Dr Ben Goldacre, director of the DataLab at the University of Oxford. As set out in the Goldacre review’s terms of reference, it will make recommendations on improvements to better support the efficient and safe use of health data for research and analysis for the benefit of patients and the healthcare sector. The review is expected in April 2022.
Following the launch of the Goldacre Review, in June 2021, the government published Data saves lives: reshaping health and social care with data. The draft strategy sets out the government’s vision for how data will be used to improve the health and care of the population in a safe, trusted and transparent way. The ultimate goal is to have a health and care system that is underpinned by high-quality, readily available data. A final version of the strategy is expected to be published in spring 2022.
Since the announcement of the review and the draft strategy, we have engaged with NHS leaders through our member networks to understand their views, concerns and aspirations on the use of data for research and analysis in the NHS. This includes launching a landmark nation-wide Healthy Data consultation and representing members’ views to Dr Goldacre, his team and NHSX during focus groups and at regular meetings.
Our input and that of our membership will be formally acknowledged in the published Goldacre Review and has already been incorporated into the draft data strategy. We are grateful to our members, Dr Goldacre, his team and NHSX for engaging so extensively ahead of the final reports.
The Goldacre Review and the data strategy intend to be complementary and are expected to be published in tandem in spring 2022. This report sets out the key issues our members would like to see feature in the final report and strategy.
The view from NHS leaders
The COVID-19 pandemic has had a huge impact in accelerating data transformation in the NHS, but legacy systems and less efficient ways of working will be a barrier to change.
Trusts are at different stages of their data transformation journey and healthcare providers, clinicians, analysts, researchers and innovators across health and care have individualised and personalised needs and priorities. Our members believe that to successfully deliver data and research transformation in the NHS, the Goldacre Review and data strategy should cover the following priority issues. They will require greater attention from government and the national bodies, including NHS England and NHS Improvement (NHSEI).
The Goldacre Review and data strategy should prioritise addressing the barriers to transformation and innovation posed by outdated IT equipment which is endemic in the NHS. Currently, health and care staff use a plethora of legacy IT systems, many of which do not work with other systems across the NHS, subsequently hampering successful digital integration and better patient outcomes. Almost a quarter (22 per cent) of doctors who responded to a British Medical Association survey for its Vision for NHS IT report said that IT systems at their place of work are not fit for purpose – specifically the electronic medical record (57 per cent) and current operating systems (55 per cent). Fixing these issues will require specific focus in the Goldacre Review and data strategy and more funding. We cannot support innovations for tomorrow’s solutions with yesterday’s mismatched equipment.
Linked to the infrastructure point above, it is imperative that the Goldacre Review and data strategy recognise and further support the move to statutory integrated care systems (ICSs) from July 2022. It is reassuring that all ICSs will need to have smart digital and data foundations in place, however trusts have place-based differences. The way these capabilities will be developed and delivered will vary from system to system, and we welcome this. However, it will be imperative that data can be shared easily between systems. The report and strategy need to respect this variation while supporting interoperability cross-system.
At the level of the data itself, we find that different interpretation of key data protection terms such as ‘anonymisation’ can hinder legitimate data sharing between organisations by creating additional and disproportionate work, leading to confusion. This has created a risk-averse culture and ultimately leads to a reduce in valuable data sharing in the public interest. NHS professionals also experience this issue in relation to the differing use of codes (known as ontologies) to label the same health condition, which makes comparisons between data sets challenging. We call on the Goldacre Review in particular, to take a deep-dive approach to these challenges and provide specific and granular recommendations to mitigate and resolve these issues at a national level.
The Goldacre Review and data strategy should take action to improve ethnicity coding and collection. We already know there are significant data quality issues with ethnicity coding in health records and systematic biases in the data. For example, among clinical commissioning groups, an average of 89.5 per cent of patients had a known ethnic category, with some reporting as low as 72.6 per cent. This means that the ‘Unknown Ethnicity’ category included 6,317,905 patients. This one example represents a major blind spot in work to reduce ethnic inequalities in our system. [ 1 ] Having complete, valid and consistent ethnicity data is vital for planning services, conducting research and monitoring inequality trends across health and care pathways. Without knowing the ethnicity of our patients and service users, we cannot hope to eliminate disparities in access, experiences and outcomes. We need to count everyone because everyone counts.
The draft strategy explicitly sets out commitments to reduce the administrative burdens for data processing. We believe this commitment will be carried through into the final report, which will be welcome news for NHS leaders. Automating time-consuming administrative tasks will go a long way to help alleviate pressures caused by staff shortages and workforce issues. The Topol Review found that between 15 per cent and 70 per cent of a clinician’s working time is spent on administrative tasks. Assistance with administrative tasks will be of additional help given high levels absence due to COVID-19 which may recur seasonally each winter as the virus becomes endemic.
The Goldacre Review and data strategy need to address the challenge of 160 trusts and 8,000 GPs all acting as separate data controllers and to reduce duplication of data access requests, with a single common application form used for all ethics, information governance, and other data access permissions, that can be used by all individuals and organisations reviewing projects.
NHS leaders would expect the review and strategy to promote data models that improve accessibility while implementing the highest standards of information governance, transparency and security. For example, the use of secure data environments (such as trusted research environments) for access to data is key to this. They support high standards by removing the need for data to be physically shared between different users. Data remains within a secure environment, is analysed in situ and only by those whose credentials have been established by an accredited authority.
We also need to move to a future where real-time data and analytics are a part of day-to-day care. Using real-time data, the NHS could deliver proactive care, improving health outcomes, reducing hospital readmissions and improving all-round efficiency. But most clinicians are hampered in their inability to access and analyse said data.
Finally, the review and strategy need to address how to manage patient, public and professional concerns about commercial access to NHS data for uses such as development and evaluation of drugs, devices, and digital tools. They should clearly indicate that commercial arrangement for NHS patient data access between NHS organisations and third parties should be rare and if ever exclusive. There also needs to be a clear focus on benefit returns for the NHS where NHS data (in any form) is used for purposes beyond providing patient care.
Trust and transparency
Linked to the data access point above, the Goldacre Review and data strategy need to consider a feedback mechanism so that those who wish will routinely receive information on and have control over how their health data is being used. It is only through patients owning and accessing their own data that we can eradicate the elective backlog and build ICSs that truly work for patients. Currently only 20 per cent of people feel sufficiently informed about how their data will be used, with more than half fearing that they might regret giving permission. [ 2 ]
They must also focus specifically on approaches and mechanisms to maintain public trust. Transparency is important for creating trustworthy systems for data use. Without trust, citizens are less likely to agree for their health data to be used beyond their individual care, severely impacting available data for health care and research. Research shows that, generally, people are supportive of the use of their health data for purposes beyond their care – such as research and planning – as long as it is for the public benefit. [ 3 ] However, trust is hard to build and quickly lost. We have seen trust in government use of health data plummet with the care.data experience, data breaches and more recently with the scheme to centralise GP patient records. There is a challenge for the NHS to ensure that we maintain our high public trust level while we innovative and work with partners less favourably viewed. Public trust, transparency and appropriate data sharing needs to be front and centre of both reports to ensure success.
- 1. NHS Race and Health Observatory, Innovating for all [web page, accessed 4 April 2022] www.nhsrho.org/what-we-do/innovation-for-all-ages/ ↑
- 2. Healthwatch, How do people feel about their data being shared?, https://bit.ly/37uQQrW ↑
- 3. Understanding Patient Data (2018), Public attitudes to patient data use, https://bit.ly/3v3k5tM ↑
Following the extensive engagement we have had with Dr Goldacre and his team, we believe that they share our views, and are encouraged by the work they have undertaken to improve the efficient and safe use of health data for research and analysis for the benefit of patients and the healthcare sector. The Goldacre Review is now finalised pending publication. However, we will continue to have a key role in future by pushing for key recommendations to be adopted by the government and to support their implementation within the NHS.
The data strategy is an important opportunity to improve how data will be used to improve the health and care of the population in a safe, trusted, and transparent way
We will continue to engage with the government to ensure the views of NHS leaders are fully represented in the final version of the data strategy. The strategy is an important opportunity to improve how data will be used to improve the health and care of the population in a safe, trusted, and transparent way. To stand the best chance of achieving that, NHS leaders will need to be actively involved in the implementation of the recommendations. Given the collaborative way in which the review has been undertaken, it would be a mistake to impose the recommendations from the top down.
Over the last two years the NHS has been empowered to innovate at pace, developing revolutionary technology and innovative treatments in response to the COVID-19 pandemic and the Goldacre Review and data strategy should support and build on these hard-won gains, setting the direction for the use of data in a post-pandemic healthcare system.