Olivia Gomes-Baho, UPD Summer Intern
The Labour Party winning the General Election on 4th July marks a potential change in government investment, policy and strategy regarding health data; from its role in the NHS, the life sciences industry, and individuals’ lives. More specifically, the new Labour Government has made a series of commitments in their manifesto to create an NHS ‘fit for the future’ and gradually resolve its deficiencies by digitising patient data and streamlining care across different providers. Many of these pledges may have an impact on how health data is shared and used, and how people feel about it.
Manifesto Commitments
National Data Library
First, Labour has pledged to create a ‘National Data Library’ which will bring together existing research programmes to drive innovation, particularly in the AI sector. Striving to prioritise ‘public benefit’, Labour sets out its intention to focus the results of this innovation on public services. In the long term, this innovation could certainly support Labour’s goal to boost growth in the life sciences, biotech and medtech sectors, deliver new treatments, and make the NHS more efficient.
To achieve this, Labour will have to consider the role of existing ‘data libraries’ and databases used for similar purposes in order to specify the scope and objectives of the ‘National Data Library,’ as it could be argued that the NHS Secure Data Environments and Office for National Statistics’ data platforms (amongst others) already serve similar functions. Moreover, their focus on innovation and industry may require the Government to consider public acceptability of data being shared with commercial partners. This is if health data is indeed included in the National Data Library – there is a lot that still needs to be defined.
Digitising Records
Additionally, Labour has committed to ‘syncing up’ patient data and resources across different health and care services to create shared waiting lists as well as digitising patient records, such as the children’s Red Book. These commitments are strengthened by the Prime Minister’s comments about joining up health records, too. These reforms, which were also pledged by the Conservatives and Liberal Democrats in their manifestos, are intending to create a more streamlined service, where healthcare professionals have digital access to the right information when it is needed. The in-progress Federated Data Platform will likely some of these functions, as well as Labour’s stated intention to strengthen Integrated Care Systems.
As Health and Social Care Secretary Wes Streeting criticised the speed of the Federated Data Platform’s rollout before the election, it can be assumed that under his leadership, the Department of Health and Social Care (DHSC) will encourage the FDP’s development. As a result, reliance on paper-based records of many Hospital trusts should continue to decrease, but the scope of the FDP could increase.
The NHS App
Furthermore, Labour has pledged to transform the NHS app into a ‘single front door’ to NHS services, allowing patients to book appointments and view their own records, as well as making treatment guidelines and performance data visible to the public. Consequently, the App’s development may increase patient understanding and awareness of their data and may improve communication between patients and healthcare providers. Such developments would likely need investment in the App’s software, which already has a sizeable usage due to the Covid-19 pandemic. A potential drawback of this reform may be low uptake of the App amongst those with limited technical abilities, unreliable access to the internet or a smartphone, and those who are wary about interacting with digital-first systems. Therefore, efforts may need to be made by the government to support the public in utilising the App.
Post-election
Since the election, Streeting has outlined more of his immediate priorities in office, such as putting primary care and prevention at the top of his agenda for driving change.
Economic Growth
Streeting has announced his intention to make economic growth a main objective of the DHSC, prioritising getting people healthier and back into work as well as finding more opportunities for the NHS and the life sciences industry to collaborate more, indicating that more commercial partnerships may be on the horizon. We have also seen ministers from the Department for Science, Innovation and Technology meet with DHSC ministers to discuss how they can work together to partner with the life sciences sector to “help rebuild our NHS, fuel growth, and […] drive medical breakthroughs in Britain and across the world”, suggesting the new Government sees life sciences and innovation as integral to its work on health and will promote increased cooperation between the two departments.
Legislation
The references to the life sciences industry in meetings and conferences have been coupled with a pledge in the King’s Speech to permit ‘broad consent for areas of scientific research, and allow legitimate researchers doing scientific research in commercial settings to make equal use of our data regime’ and reform certain data laws to ensure high standards of protection across the board. The reform of the data protection regime, through the proposed Digital Information and Smart Data Bill, seems to bring back some less controversial aspects of the last Government’s suggested changes in their Data Protection and Digital Information Bill; the reuse of data for scientific research being one, and the IT standards in health and social care data systems being another (our analysis of the previous bill can be found here).
There may also be an AI Bill – whilst it wasn’t specifically mentioned in the King’s Speech, there have been many references to AI legislation. We look forward to hearing more about this, as health is a sector where AI is frequently cited as having the potential to bring many benefits, though public concerns remain about its use.
Overall, the use of health data is certainly a key enabler of facilitating reform and measuring progress in the new Government’s key areas of focus: economic growth, prevention and primary care. However, it is also essential to these reforms that patients’ access to technology, and their understanding and views on their health data, are taken into consideration to more effectively implement long-lasting change to NHS services.