Making NHS data work for everyone

Reform was delighted to host a post-publication event for the report “Making NHS data work for everyone”, which explores the value of NHS data and how to build fair commercial models when there is access to NHS data to create a product or service.

The event consisted of a short presentation from the authors and a panel discussion with Q&A.

Speakers included:

• Chair: Hetan Shah, Executive Director, Royal Statistical Society
• Eleanora Harwich – Director of Research, Reform and author of our recent report ‘Making NHS data work for everyone’
• Lord James O’Shaughnessy
• Dr Nicole Mather, Director, Life Sciences and Healthcare, Deloitte
• Jess Morley, Technology Adviser, Department of Health and Social Care

A drinks reception followed once the panel finished.

Reform hosted a post-publication event for the ‘Making NHS data work for everyone’ report. The report explored the value of NHS data, and how to build fair commercial models between NHS organisations, patients and industry when there is access to data to create a health product or service.

The event kicked-off with a presentation from Eleonora Harwich, Research Director at Reform and co-author of the report. This was followed by a panel discussion chaired by Hetan Shah, Executive Director, Royal Statistical Society, with Lord O’Shaughnessy, Dr Nicole Mather, Director, Life Sciences and Healthcare, Deloitte, and Jess Morley, Technology Adviser, Department of Health and Social Care.

The panellists were positive about the “enormous” opportunities of NHS data, from innovation in healthcare to potential financial gains for the NHS, but individually highlighted areas that needed reform to ensure a fair apportioning value between NHS organisations and private partners. The conversation focused on three main challenges: fair partnerships, workforce skills and patient engagement.

Fair partnerships

A central question for the discussion was: what would be a fair partnership between NHS organisations, patients and industry when co-creating data-driven goods and services? Lord O’Shaughnessy stressed the main aim of partnerships should be to maximise the value of NHS data in the fairest and most equitable way. Panellists agreed that part of achieving this would involve a ‘commercial model’ - whereby partners receive profits from the creation of data-driven technologies. As Eleonora Harwich argued, these are rare occurrences on the ground. Nonetheless, panellists were in consensus that the NHS should be considering commercial models when working in partnership to build data-driven goods and services, and whilst there is no one-size-fits-all, there were some models such as royalty shares that could be better than others.

Dr Mather pointed out that partnerships between the NHS and private sector are unique – as the NHS has “a lot to give”. The NHS brings “precious”, sometimes personal, data and clinical expertise to the table, without which innovation cannot happen in the private sector. However, with this, Dr Mather stressed policymakers needed to consider the risk of over-estimating the value of NHS data, which could stifle innovation and lead to the UK’s life sciences sector losing its competitive advantage world-wide.

Workforce skills

There was agreement that developing digital and data analytics capabilities within the NHS was crucial. A key hindrance to this was maintaining an equal distribution of skills and expertise between the private and public sector. An audience member questioned whether there was potential to share workforce between the NHS and industry. Lord O'Shaughnessy highlighted the role innovation partnerships in the higher education sector have had in fostering the sharing of skills and expertise between government, academia and the healthcare sector, and how these models could be replicated within the NHS. While  panellists agreed that workforce sharing was possible, they argued it should not be policy-driven.

Nonetheless, methods and roles within the workforce - from data collection to liaison with external commercial partners - within the NHS would also need to change if it was to take full advantage of data-driven technology. Indeed, a GP in the audience commented “talking about data quality is music to my ears”, arguing that there should be more training on the importance of data quality. Unfortunately, there is “no magic lever that NHS England can pull” to make workforce practices change on the ground, said Dr Mather, the best it can do is provide good guidance. This guidance would need to be “encouraging not patronising” added Jess Morley, if it were to achieve best results.

Patient engagement

Jess Morley highlighted that the “title of report is particularly important”. Making data work for everyone means ensuring everyone gets value, and everyone is “kept in the loop”. This should include patients, clinicians, as well as those who do not generate data or might not directly benefit from the use of data.

There was consensus that public debate and patient engagement needed to be a priority moving forward. As Lord O'Shaughnessy put it: “NHS data is still quite a niche subject, but not for long”. The work of Understanding Patient Data was widely congratulated, but it was questioned whether leading public debate should be left to intermediaries, or whether it should be led by government. The panel agreed that charities could play an important role in providing a conduit to patient groups by disseminating information and building awareness.

This kind of meaningful engagement requires a shift in language: if the public were to be included, the conversation would have to be less technical. Equally crucial will be to recognise people’s desire to have control and agency over their data. Data boards and data trusts—which enable patients to collect their own data, decide how this data is used and clearly understand the benefits of data sharing—could prove effective in incentivising people to engage positively with their data.