The Government’s recently published NHS 10-Year Plan and today’s Life Sciences Sector Plan set out one of the most ambitious health agendas to date. If delivered in full, these measures could transform patient care, reinvigorate the economy and underpin sustained improvement of the nation’s health.
Read our NHS consultation response
Data, digital and technology is the golden thread running through the plans for improving health care and boosting the UK’s existing strengths in the life sciences. This includes a landmark £600 million investment in a Health Data Research Service, designed to tackle the long-standing challenge of data fragmentation and improve care for millions of patients. A further £1 billion investment is earmarked to expand and enhance the UK’s consented health research datasets and infrastructure to kick start a genomics revolution in healthcare.
However, there is a growing disconnect between this future ambition and the reality on the ground. The barriers and inefficiencies in the system which delay research for months and years, as identified by major reports like the Sudlow Review, have not gone away. In fact, they have got worse since the pandemic and are now causing progress to stall as focus shifts to the future promise of the new Health Data Research Service.
For years, the health data community has worked to enable UK-wide research using primary care data in secure ways that protect patients’ privacy. This is important as many conditions such as arthritis, back pain, mental health conditions and many others are predominantly seen by GPs, and that will only increase with the planned shift from hospital to community.
We now have world-leading data research services such as CPRD and large public investments in NHS Secure Data Environments and platforms like OpenSAFELY that demonstrated its worth in improving outcomes for patients in the pandemic – yet secure access to population-wide GP data for crucial research into cancer, diabetes and heart disease has still not been achieved, and neither has that primary care data been available for linkage to consented cohorts other than under COVID-19 regulations.
The Government has promised “not to repeat the mistakes of past strategies that offered warm words without concrete action.” This pledge must be followed through, if these plans are to succeed.
David Seymour, Director of Data Partnerships at Health Data Research UK said:
“The ambition in these new government plans is much needed, but it is colliding with a system full of potholes that disrupt, delay and damage vital health data research.
“Our life sciences sector holds the key to faster discovery of treatments, better patient care, prevention of diseases and the essential economic growth required to fund a revitalised NHS. Yet in access to health data, researchers and innovators are gridlocked by legal, governance and contractual complexity, coupled with a lack of people with the capacity and authority to unblock barriers and make decisions. This is the harsh reality that undermines our boldest plans.
“While major investments in the genomics revolution and Health Data Research Service are welcome, there is a real danger of ‘planning blight,’ where the focus on designing the future system stops us from improving the performance of the current system. The most radical thing we can do is get the basics right. This means a relentless focus on maximising the value of our existing world-class data assets – the likes of the Clinical Practice Research Datalink (CPRD) research service, UK BioBank, Genomics England and Our Future Health – enriched through data linkage and novel data collection.
“Fixing today’s ‘potholes’ isn’t a distraction from the long-term vision – it’s the only way to make it happen. Anything less holds back the UK’s global competitiveness and fails patients and the public.”
Read the Sudlow Review
