Our new white paper recommends how our health data policy can create the most clinical, societal and financial value.

There is more that can be done to make the most of NHS healthcare data. By maximising the opportunity to use data-driven innovations to improve healthcare, people in the UK and the NHS will benefit, says a new white paper from Imperial College London.

The white paper, ‘NHS Data: Maximising its impact for all’, launched on 20 April, identifies strategic and technical recommendations to move towards developing a health data policy ecosystem that is designed so that value, either clinical, societal or financial, is more readily extracted from patient data. This new white paper adds to a previous report produced as a part of an ongoing project by the Institute of Global Health Innovation (IGHI), ‘NHS Data: Maximising its impact on the health and wealth of the UK’, providing a post COVID-19 update on the UK’s health policy data landscape, which highlighted how securely accessed datasets could rapidly translate to practical treatments that have helped millions of people worldwide.

Based on the research conducted for the preceding white paper, six areas of action were identified as being key to maximise the impact of NHS data for the health and wealth of the nation: Public Opinion and Engagement, Data Governance and Legal Frameworks, Data Quality and Infrastructure, Capabilities, Investment and Value Sharing.  

Over the past three years both political and major public health events, including the COVID-19 pandemic and Brexit, have impacted how health data is shared in the UK. The public support for use of healthcare data was strengthened by seeing the benefits of its use for treatments during the pandemic. The formal introduction of Integrated Care Systems offers the opportunity for  digital transformation across the health and social care sector  to align. Building on the substantial national investment since 2020 to improve health data quality and infrastructure, there is now an opportunity to build the data landscape we need.

Professor the Lord Ara Darzi, Co-Director of the IGHI at Imperial College London, said: “We know that there are great opportunities in creating health value within the UK’s healthcare data. The COVID-19 pandemic highlighted the rapid translation of huge datasets to actionable management plans for millions of people around the world. Our experience during the pandemic – using healthcare data as an asset and achieving remarkable results – is an opportunity we must exploit and replicate in more normal times.” 

Maximising impact for all

The NHS routinely collects patient data. If used effectively and with public trust, the value for patients and the public is huge.

Better use of NHS data could improve patient outcomes and lead to financial benefits for the NHS, and the economy. The paper identifies five key benefits:

• Improved patient care: Increasing use of innovative treatments and technologies allows for better patient outcomes, personalisation of care and in particular novel technologies such as AI for advanced patient care.
• Population health: Health data helps better understand diseases and develop innovative treatments. With larger population sets, trends are easier to observe and decode. In addition, with increasing machine learning methods, algorithms need to be trained on larger datasets.
• Improved operational efficiency: Better data can allow the NHS to develop more efficient services by understanding where increased resource allocation is required and what improvements can be implemented.
• Economic growth: Create jobs and economic growth by enabling the life sciences and technology industries to develop data-driven solutions, technologies and therapeutic interventions that directly benefit people in the UK.
• Financial return: Provide direct financial benefit for the NHS through appropriate licensing and value-sharing agreements with the right partners.

To facilitate these benefits, the governance of the UK’s health data policy must properly reflect the views of patients and the public. Public benefit must be central in all NHS data partnerships, with a consistent call from citizens that public benefit must outweigh profit.

Looking to the future

While there are challenges in this space – considering for example the recent merger of NHS X, NHS Digital and Health Education England to become part of NHS England, and the lack of trained personnel in the digital health space – the move towards integrated care systems has provided health and care organisations with an opportunity for digital and data transformation, aiming to deliver better joined up support for patients.

There is also the chance for progress, with the paper highlighting the opportunity to build the necessary data environment by creating infrastructure that enhances transparency, analytical quality and efficiency. Transitioning to secure data environments can also foster innovation, by providing secure storage access with the highest levels of privacy and security. Investing in data infrastructure is vital for enabling data-driven healthcare in the longer term.

Dr Saira Ghafur, report author and Digital Health Lead at the Institute said: “The UK is one of the best-placed large economies in the world to use its health data assets for transformative health, scientific and economic impact. First and foremost, the use of this data can determine better health outcomes for patients and the public. To ensure we do this effectively, patients and the public must be consulted effectively at all stages of any process to understand where the red lines are before embedding into practice to uphold trust and transparency."

Lord James O’Shaughnessy, report author and IGHI Visiting Professor, said: “This white paper outlines the many benefits that can come from better use of the UK's health data and a range of practical changes that are needed to realise those opportunities. That includes continuing with investment in digital infrastructure, building data skills in the health workforce, and creating models of partnership between the NHS and the private sector that provide good value to the patients whose data is being used."

Ghafur S, O’Brien N, Howitt P, Painter A, O’Shaughnessy J, Darzi A.
NHS data: Maximising its impact for all. Imperial College London (2023)