NHS data is valuable – how can it ensure a fair return?

This photograph of a doctor and patient represents a discussion over NHS patient data

By Gianluca Fontana and Saira Ghafur, Centre for Health Policy

Our National Health Service owns some of the most comprehensive patient data sets across the globe. This makes these data a very valuable asset – not just as a springboard for improving health and care through learning from the data, but also in terms of the potential for financial return. It is critical that if the NHS shares this data with companies, in an appropriate and secure way, it also receives a fair share of this financial return.

These are arguments we make in a new article published in Lancet Digital Health. We also highlight the need for a wide and transparent debate on this topic, alongside making some key recommendations for policy and practice change in this area. By taking these critical actions, we believe that we all stand to benefit – both as patients and taxpayers.

The value of NHS data

Healthcare data is extremely valuable. Through increasing our understanding of health and how healthcare systems are working, it has the potential to make care more effective and efficient. Thus, improving patient outcomes and financial sustainability. In other words, it can help providers and health systems, like the NHS in the UK, get better at what they do.

It can also enable the discovery of new drugs or the development of new technologies, including digital health applications and artificial intelligence algorithms. Accessing healthcare data is therefore a priority for businesses and research institutions, which traditionally drive this type of innovation. In doing so, they certainly can help develop a better future for our healthcare systems.

However, giving access to sensitive data, even in anonymised form, to private organisations is something that the public has often expressed concerns about or rejected altogether. It is therefore critical that if the data is shared, it is done with the awareness and support of the public. And, according to secure and well-defined processes. Shortcuts should be avoided. The public should also be properly consulted and listened to, not nudged towards what policy wonks like us, even if well-meaning, think is right.

The issue of how to share the financial value generated from healthcare data merits a lot more attention and discussion than what has been the case so far. If NHS data leads to successful products or innovations, should the NHS receive something in return? We believe the answer is yes.

Ways to ensure a fair share

Our recent article in the Lancet Digital Health is an attempt to start a more vibrant and wider debate on this topic. We believe this should involve the public, healthcare practitioners, policy-makers, academics and colleagues from the private sector.

In the article, we suggest the need for an updated policy and decision-making framework to ensure that the NHS realises fair financial value from its data. We strongly recommend that NHS organisations consider a wide range of mechanisms to capture some of the value, including:

  • Getting free or discounted access to products developed from the data
  • Receiving a one-off payment in exchange for data access or a series of one-off payments based on regulatory and commercial milestones
  • Receiving a royalty payment or share of the revenue from the products that are developed using the data (including by leveraging shared ownership of intellectual property generated in connection with the partner’s data mining)
  • Receiving a share of the profits of the company commercialising the data
  • Receiving a share of the equity in the company commercialising the data
  • Receiving a so-called ‘golden share’, which in specific predetermined circumstances can out-vote all other shares in the company commercialising the data

The right approach will vary from case to case, but it is important to consider the full range of options.

It is critical that this issue is discussed more widely and that an approach supported by the public is identified and implemented. As shown by recent press coverage and by the debate leading up to the last UK general election, less-than-transparent or rushed attempts to take action in this area are likely to generate significant resistance, and to negatively impact trust in the NHS and the progress towards a better, data-supported future in healthcare.

Gianluca Fontana is the Director of Operations at IGHI’s Centre for Health Policy. Dr Saira Ghafur is the Centre’s Lead for Digital Health. 

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