The forthcoming health data strategy will be the framework with which the UK will either maximise or fail to maximise the value from its health data assets. This value will be measured in improved patient outcomes, better operational performance of the NHS, personalised healthcare, pharmaceutical innovation, a thriving life sciences industry, and lastly, financial returns. Key to its success will be public trust. However, NHS Digital are already making relatively opaque announcements to pool together up to 55 million people’s GP data. This has been met with outcry from activists and the media who warn that the lack of transparency on how data will be kept secure and how it will be used runs a strong risk of public withdrawal of support.
The public are sensitive to data usage, particularly when private companies are seen to profit from using data at the expense of, or without appropriate benefit to, the NHS. However, they are broadly supportive of anonymised data sharing when there are clear benefits to patients and the NHS.
The data strategy will need to go further than previous strategies to tackle the problems around security, public trust, and value, which remain the largest barriers to successful data sharing. The strategy should commit to a real engagement with the public, beyond a public consultation, that lays bare the data sharing agreements, what the benefits to patients are, how it will generate value for the NHS, but also, where improvements from data use may be less clear. The public have spent a year with experts presenting data on the news every day and are currently well placed to be engaged in such a debate.
Of particular importance in the strategy will be the draft value framework and what assurances are given to maintain transparency, such as an annual publication of all the data partnerships the NHS negotiates. These will be key to whether the government can tie together a narrative that successfully presents health data as able to both improve patient outcomes and reap financial gains, without providing further ammunition to the accusation of NHS privatisation or private sector profiteering.
Overall, health data provides an interesting case in the broader debate around data. The NHS is one of, if not the most trusted organisation in the UK and capitalising on the data it holds could lead to substantial improvements in population health. That is not to say that it cannot be used unethically; data security and trust remain of the utmost importance. But it is to say that opportunities for transformative innovation with public support do not come around often. It should not be wasted.
You can read our full report on what to expect from the UK Health Data Strategy here.