Just days after the delay of the General Practice Data for Planning and Research (“GPDPR”), the government of the United Kingdom (“UK”) published a draft of its digital health strategy – ‘Data saves lives: reshaping health and social care with data’ – on the 22nd June. The ambitious ten-year proposal lays out a vision to harness the power of patient data and technology to improve healthcare outcomes and processes.
The word ‘draft’ is key here. This strategy is not final, and the government will seek feedback from the public and the health sector in the coming months, before publishing a final version later in 2021.
It’s likely that, after the controversies surrounding the GPDPR, the government has learnt a lesson: transparency and communication are critical when it comes to using patient data.
To get you up to speed on the draft, we explore the main themes below.
Traditionally, patient data has been directed towards clinical trials and the development of new medicine, but the pandemic has highlighted the potential for data to improve healthcare planning, management and operations.
The NHS is effectively a labyrinth of patient data that sits within different trusts, offices and, even, file cabinets. The government’s new strategy aims to break down these silos, so that patient data sits in a centralised system that can be updated in real-time. The goal of doing this is to improve patient care, by keeping patient data up-to-date and seamlessly accessible for different health practitioners. Furthermore, for healthcare professionals, having a centralised system will also improve efficiency and collaboration, and reduce the time spent on manual paperwork.
“It is unsurprising that the UK government, and many in research and healthcare, want to expand the use of NHS data further. As a nationally representative, large data set, embedded as part of a universal healthcare system, it is unparalleled. The potential it offers for improving care in the UK population cannot be overstated. But there is also potential to place the country ahead in health research, and healthcare innovation, particularly in digital health technology or artificial intelligence.” – Naomi Lee, Editor at The Lancet, for the Financial Times
The draft strategy takes the form of seven chapters, each focusing on a different goal that, when combined, creates a vision for the future of healthcare. It’s worth noting that the goals within the strategy are conceptual, and not much information is actually given on how they will be achieved. It’s likely that this is because the strategy is in draft form, meaning the government will not plan concrete steps for implementation until the overarching vision is finalised. For now, the goals are:
Bring people closer to their data
The first chapter lays out a notion that is present throughout the strategy: to empower citizens with access to their healthcare data. To do this, the government wants to give patients digital access to their health information, as well as creating a system that makes it simple to manage appointments and medications. It’s possible that the new system could build on the foundations of the NHS App, although the strategy does not specify this.
The chapter also emphasises the importance of data protection and regulation when using patient data to improve services. Keeping citizens safe is ultimately the main priority, and so any digital service will follow the laws of the UK General Data Protection Regulation (“GDPR”), the Common Law Duty of Confidentiality, and the Health Research Authority’s Confidentiality Advisory Group.
Give health and care professionals the data they need to provide the best possible care
The silos we mentioned earlier in this blog can be a barrier to efficient patient care. Without a central store of patient data, the government considers it difficult for health care staff to make timely decisions that could save lives. By integrating patient data across healthcare organisations, in the form of an Information Governance Portal, the government hopes to reduce this problem. The result, they anticipate, will be greater transparency and knowledge sharing between different healthcare organisations, so that they can provide better care to patients.
Moreover, to ensure that health care professionals feel confident in understanding what data they can and cannot share, the strategy outlines plans to provide new and improved information governance guidance by 2022.
Support local and national decision-makers with data
The government recognises the significance of health data in enabling both local and national leaders to plan, commission and improve their services – citing the government’s response to the coronavirus, which heavily relied on data, as an example. The proposal seeks to break down the longstanding divisions between hospitals and GPs, and the NHS and council services, by creating an integrated care system (“ICS”).
To do this, the strategy notes that the government and NHS will need to improve data science capabilities. It proposes training programmes and the creation of a new analyst workforce observatory to support the development of data science within the public and health sectors.
- Improvedata for adult social care
Research from NHS Digital shows that 71% of the adult social care sector does not have digital access to people’s medication information, while just 30% is partially digitalised. The strategy therefore outlines a vision where social care service users and providers will have better access to their data, so that they can make more informed decisions and receive better care.
Empower researchers with the data they need to develop life-changing treatments, models of care and insights
The strategy places a great emphasis on innovation and improving health outcomes at a national level – not just individual. It therefore suggests using patient data to improve engagement with clinical trials and research studies. More information on this is expected to be shared in the pending Goldacre Review during the Summer, which will explore how patient data can be used “for research and analysis for the benefit of patients and the healthcare sector.”
Develop the technical infrastructure
The ambitious visions in the strategy need to be underpinned by the right digital infrastructure – one that is secure from a cyber security standpoint. The draft therefore puts forward a plan to store patient records within the cloud, as a way to give real-time, seamless access to patient data to relevant healthcare providers across the nation.
To ensure that the new system is secure, the government also plans to review and upgrade the NHS’ cyber defences, although not much detail is given on how this will be done yet.
Help developers and innovators to improve health and care
The strategy recognises that the government will need the support of technology companies – particularly those who specialise in artificial intelligence (“AI”) for health – to assist with their vision. It therefore plans to support and invest in a number of AI for health players, offering £140 million over 3 years to support innovators across the full spectrum of development, with the aim of NHS implementation and adoption.
While many commitments in the strategy will be welcomed, it is also not without its controversy – particularly when it comes to the potential for patient data to be shared with third parties. The new strategy outlines rough plans to enable data-led innovation, by sharing patient data with approved partners for planning, research and clinical trials.
The detail of these plans are currently lacking, which is creating concern due to a lack of transparency. We know from the backlash faced by the GPDPR that citizens and health practitioners alike are wary of any government actions that could be perceived to infringe patients’ digital privacy.
Another controversial point within the draft is the plan to introduce secondary legislation that would enable lawful data sharing between health organisations for activities like planning, policy development and analysis, without this breaking patient confidentiality. While the strategy includes a plan to share a transparency statement, setting out how health and care data has been used across the sector by 2022, many privacy campaigners do not think this is enough. As MedConfidential commented:
“Does this Government really believe it can use “secondary legislation” to overturn the millennia-long trusted principle of doctor–patient confidentiality that lies at the very heart of healthcare?”
At the heart of the criticism is concern that patient trust in the healthcare system could be eroded without a clear and transparent explanation of how patient data is used and who it is shared with. Critics also thinks that patients should have a choice over any third parties their data is shared with – not that this should simply be part and parcel of wider law.
The draft strategy outlines an ambitious overhaul of NHS operations to bring the UK’s health sector into the digital age. With this plan, the devil is very much in the detail. It will be interesting to see whether the government puts more emphasis on transparency, communication and stakeholder buy-in than it did in respect of GPDPR.