Bringing personalised healthcare to children

In 2017, as it planned its future outside of the European Union, the UK government commissioned the Life Sciences Industrial Strategy, with the overarching aim of putting the UK in a world-leading position to take advantage of the health technology trends of the next 20 years. The strategy proposed that the NHS should work in a ‘new collaborative environment where industry and the health system work together, underpinned by the rich datasets that the NHS can now provide.’ But what would a partnership like this actually look like and what are the challenges it might face?

Harnessing the power of real-world data

In 2021, Great Ormond Street Hospital for Children NHS Foundation Trust (GOSH) and Roche UK established a formal collaboration with the goal of moving closer to personalised healthcare for children through the better use of data that is routinely collected in treatment. Building on GOSH’s position as a leader in digital innovation in the NHS, the partnership is jointly addressing practical data engineering and analysis issues, using cutting-edge technologies such as artificial intelligence (AI) and machine learning to improve care at GOSH and beyond. 

This unique collaboration also aims to develop a better understanding of how the NHS and pharmaceutical companies can work together to improve the lives of patients. By enabling the automated analysis of anonymised information – such as genomic data, images and text – tools and clinical workflows can be developed to enhance clinical decision-making at scale across the NHS, with the ultimate goal of ensuring patients get the best possible care at each step of their journey, built on learnings from every patient that has been treated before. 

To do this, Roche UK is providing funding and staff to work closely with GOSH’s Data Research, Innovation and Virtual Environments Unit (GOSH DRIVE). All projects undertaken within the partnership are conducted within GOSH’s secure digital research infrastructure and no patient data is shared between the organisations or outside of GOSH. Roche also worked closely with GOSH to support their understanding of the ABPI Code and ABPI collaboration guidelines and ensure all outputs of the collaboration are compliant. 

Delivering benefit to patients and health systems

GOSH and Roche UK have been working collaboratively towards the objectives of this partnership for the past 20 months. At the start of the partnership, the amount of organisational and operational challenges that faced to implement modern, open-working computational methods in a hospital setting were underestimated. And while many staff groups were enthusiastic to participate in the partnership, the availability of clinical staff time to work on projects and attend meetings to discuss plans and progress was an ongoing barrier, particularly with current pressures faced by the NHS.

But despite these challenges fantastic progress has been made. Already, an AI tool has been developed to extract important genomic information from thousands of genomic reports, something that was never possible before. The tool unlocks multiple new possibilities for improved hospital operations and research by extracting information with 90 per cent accuracy, increasing productivity by 30-fold.

The partnership has also developed a scalable analytics platform for rapid and reproducible research using real-world data, involving five clinical teams. For the first time, GOSH can use real-world evidence from routine electronic health records by using PICTURE, a digital tool that aggregates information such as diagnoses, procedures, lab tests and hospital admissions, to provide data that can help improve patient care, including the efficacy of treatment pathways, counselling about the likely impact of disease, and planning and optimising hospital operations.

Partnership rights

GOSH owns the intellectual property of what is developed within the partnership and the analytical and AI tools built together will be shared under open licences for scientific review and re-use across the NHS. This approach will help to break down existing barriers to the rapid uptake of new technology advances across the NHS. The work in genomics is shared with NHS England where it is helping to shape national genomic data standards for personalised medicine. The partnership has also established an NHS Clinical Informatics Unit focusing on scalable and reproducible analysis of non-identifiable real-world data to improve hospital operational efficiency. 

Both GOSH and Roche are incredibly proud that the collaboration has been used as an example of a successful NHS data partnership, which offers positive patient, healthcare system and societal impact, in NHS England’sGuide To Effective NHS Data Partnerships. Over the coming years, the partnership aims to further develop these tools into clinical practice/deployment. The path ahead is uncertain, but in the words of the team (and Nelson Mandela): “It’s always impossible, until it’s done.”

Professor Neil Sebire is chief research information officer at Great Ormond Street Hospital for Children NHS Foundation Trust. Dr Rebecca Pope is UK digital and data science innovation lead at Roche Products Ltd.