A new report provides a bold roadmap for the NHS to maximise the impact of its health data.
The report, titled NHS data: Maximising its impact on the health and wealth of the United Kingdom, advocates for the UK government to take action now, before the UK is leapfrogged by other countries in health innovation. The report (available here) is from Imperial College London’s Institute of Global Health Innovation.
The report examines some of the battles facing policymakers in this space, such as quantifying ‘fair value’ for the NHS in its data sharing arrangements, and the complexity of the red tape around accessing and using NHS data. It urges the UK government to:
- increase upfront investment in health data by billions of pounds;
- involve patients in health data governance at an unprecedented level; and
- unify responsibility for the nation’s health data strategy.
We’ve set out five of our top takeaways from the Report
1. The vacuum at the top
The UK’s health ecosystem has its eyes on NHS data transforming the UK’s health outcomes, scientific community and economy. What we are missing is a single organisation ‘unequivocally tasked with leading the way’. Efforts to date are piecemeal and there is confusion about who is responsible for overseeing the UK’s health data strategy. The UK government, the NHS (in each of the four home nations), academia, charities and the private sector have set up numerous efforts in this space. However, what we need is a narrative that unites these key players and brings together senior decision-makers.
2. Stepping up patient involvement
If you work in this space, you know patient trust and buy-in is key. But efforts on involving the public on acceptable uses of their health data have been fractured to date. There is a lack of transparency which could threaten the huge amount of trust and goodwill the UK public places in the NHS. Patients need to feel this is something being done with them, not to them.
The Report advocates that the NHS develop and implement a communications strategy on the use of health data that fosters patient trust. This could involve describing tangible benefits for patients through real world examples and developing a communications strategy for mass and social media. Importantly, this could also look at tackling misinformation.
3. Talking big on financial investment
To maximise the benefit of NHS data, the government needs to make a substantial upfront investment which is many multiples of what we are seeing now (estimated to be billions of pounds). Work needs to be done at source to ensure health data is digitised and data quality improves so it can be leveraged at the kind of scale needed to maximise returns. We need data science and engineering talent on a huge scale.
Where should this investment come from? There is a strong case for public funding, but there may be a role for private sector support in specific projects.
4. What is ‘fair value’ for the NHS?
Estimating the value and benefits of NHS data is difficult. This makes developing business cases and negotiating data sharing arrangements with the NHS a huge challenge. The NHS needs to realise fair value from the health data it contributes to research in the private and public sectors.
The Report describes a number of arrangements the NHS can explore, and their pros and cons. We are already regularly advising on some of these arrangements at Baker McKenzie; but some of the arrangements discussed in the Report are rarer in the market, often as they are less likely to be viable for the private sector.
However, even novel problems like patient data sharing can build on existing examples and lessons learned. There are precedents for sharing sensitive assets in healthcare already: whether it’s sharing datasets like Hospital Episode Statistics with researchers, sharing clinical data with pharma and medtech as part of ethically-approved research, or sharing genetic data through the UK Biobank. This may be a new challenge, but we are not starting from scratch.
5. Legal frameworks: navigating the red tape
Here at Baker McKenzie, we are seeing a fractured view emerge across Europe on how data privacy applies to medical research. This is leading to misunderstandings and discrepancies in the legal framework, and the Report picks up on this theme.
For example, the GDPR prohibits the processing of special categories of data such as health data, unless a specific exemption applies. One exemption is explicit consent by the data subject, but alternatives are available, like scientific research purposes (which requires a basis under national or EU laws). In the UK we have such a basis in the UK’s Data Protection Act 2018. However, most other EU jurisdictions are yet to implement a similar basis in national laws, and this is leading to confusion on a pan-EU level on the legitimacy of this ground.
The Report urges the ICO to draw up guidance on these issues and others, with a focus on legal bases for processing and data sharing for primary and secondary purposes.
