Data partnerships bring benefit to patients and the NHS

The NHS has a long history of data-driven research and innovation. During the pandemic, NHS data enabled us to carry out research at an unprecedented scale and find the world’s first effective treatment for Covid-19, dexamethasone, making it available across every hospital the same day it was approved. NHS data enabled us to not just deliver the first accredited Covid-19 vaccine in the world but to rollout the NHS Covid-19 vaccine programme with a combination of speed and precision unseen elsewhere.

The NHS has achieved these successes through partnerships with universities and industry that have helped to unlock the value of health data. Partners bring expertise, facilities and often funding that, when combined with NHS skills and data – and driven by our core values of respect, dignity and compassion – leads to critical innovation that transforms patient care.

A recent report by the Institute of Global Health Innovation (IGHI) at Imperial College London provides recommendations for developing a health data ecosystem in the UK that can support value from patient data. The report recognises that there are many questions that still need to be answered, but stresses that any strategy must prioritise delivering benefits to people in the UK. This means that the focus should be on responsible innovation that improves the health and wealth of the nation.

As we look ahead, continuing to embrace data-driven innovation will enable the NHS to deliver world-class outcomes for our ever-growing population. That means more partnerships that will help us to use data more effectively; to integrate health and social care; to get better at preventing illness (not just treat it); and speeding up the discovery and adoption of 21st century diagnostics and treatments. It means harnessing the potential of artificial intelligence and machine learning to support new tools for identifying potential health risks before they become critical, allowing for more proactive interventions.

We know that patients and the public support the NHS working with industry where patient care comes first and the NHS gets fair value in return. Research tells us that this support is based on data security and the privacy of personal information. The set up of the NHS Research Secure Data Environment Network will allow industry and other partners to develop insights from a range of data while it remains protected within NHS-owned secure environments. This move to data access, away from data sharing, is a really positive step towards putting the NHS – and patients – in control of innovation that can change lives.

We need better support for forming the data partnerships themselves, and that the benefits are clear and transparent. This need is why we set up the Centre for Improving Data Collaboration (CIDC) in June 2020, to help the NHS to enter into better partnerships that make good use of data and have a bigger chance of delivering successful innovation and better value to the NHS.

Over the last three years, we have provided hands-on advice to many NHS partnerships to support innovation to take place. Using this experience, we have produced standard frameworks and guidance to help the NHS, industry and academia to think about these partnerships in a more consistent way. We are now publishing the Value Sharing Framework – a set of high level principles around how these partnerships should best take place – and accompanying Data Partnerships Guide which provides more detailed support when thinking about forming a partnership. These publications have been informed by latest government policy, work with experts in the field, looking at what is done in other countries and sectors, and our practical experience in supporting NHS organisations and their partners in forming these partnerships in recent years.

The Value Sharing Framework stresses the importance of data-driven innovation and has been developed with the aim of:

  • Delivering value to UK society and patients
  • Supporting UK economic growth
  • Bringing financial value back to the NHS

When applied, this framework will support more partnerships that have the potential for patient benefit (recognising that not all innovations will be successful) and ensuring that this is the top priority. We anticipate that this prioritisation of patient benefit may sometimes be at the expense of getting maximum financial value back for the NHS, but it will be best for society overall. Getting this balance right is nuanced and subtle work that needs to consider perspectives form across different stakeholders in partnerships, across commercial, finance, research, clinical and patient perspectives. We hope that the guidance published will support clearer, less complex arrangements that are quicker to negotiate, with the goal of supporting more innovation while ensuring return for the NHS. We hope this Framework and Guide will streamline the process of data partnerships between the NHS and external partners, allowing both parties to enter into agreements with confidence and clarity.

To provide feedback or ask for more materials, contact us here:

Dr Claire Bloomfield

Dr Claire Bloomfield, Director for the Centre for Improving Data Collaboration.

Claire is based at the Centre for Improving Data Collaboration. She oversees development and delivery of NHS coordinated investments in health data for R&D, to support the ambitions of the Life Sciences Vision and Vision for future of UK Clinical Research Delivery. Prior to joining CIDC Claire was the CEO of the world-leading UK National Centre of Excellence for Artificial Intelligent in Medical Imaging (NCIMI), at the University of Oxford. NCIMI is a launchpad to improve the healthcare industry through the use of AI.

Dr Margaret Charleroy

Dr Margaret Charleroy is the Head of Strategy at the NHS England Centre for Improving Data Collaboration (CIDC), leading strategy and policy development to shape digital and data-driven innovation across the NHS that ensures the greatest benefits for citizens, patients, and workforce across the health sector.

Prior to joining the Centre, Margaret held senior strategy roles in the public sector, including UK Research and Innovation (UKRI), where she led her council research and policy response to the covid-19 pandemic. She has held academic positions at universities in the United States and United Kingdom, focusing a research career on data management and evidence-based care to improve health outcomes in criminal justice settings.