The power of health data is a topic I’ve touched upon countless times over the past few years, but the scope of the topic has made change difficult. The healthcare sector as a whole has traditionally struggled to adopt new technologies or adapt to changes in society, but they are also having to cope with not only data being generated from multiple new sources, but also many external parties striving to make sense and use of that data.

A new report from the Reform think tank doesn’t really provide a holistic overview of this situation, deciding instead to focus on how private companies can better access the data owned by the NHS.  The report explores how such exchanges can be conducted in a fair and equitable manner.

The authors provide a number of recommendations for how this can be achieved, including:

• A framework and accounting standard should be developed by the Office for National Statistics to better understand the value of healthcare data.
• Better attempts should be made to engage with the public on the value of data and various commercial models around it.
• NHS England and NHS Digital should create a register of all existing data sharing agreements between the private sector and the NHS.
• The Department for Health and Social Care should work with other government departments to study the impact of various commercial models to avoid regional inequalities.
• The insights from this analysis should then inform national strategy to better utilize health data.

It’s always prudent to start from where you are rather than where you would like to be, so in that sense the report does make sense, as progress on better use of health data has been both painfully slow and painfully disjointed.

“There is a lack of an overall strategy considering whether the different partnership models that are emerging on the ground lead to the best possible at a national scale,” the authors say. “In addition, it highlights the importance of engaging with the public on the issue of commercial models and the use of data about them.”

A pivot towards prevention

The need to pivot healthcare towards preventing illness and helping people to remain well is something with widespread support however, not least in government, where health minister Matt Hancock has been a vocal supporter of such a shift.

The challenge is that the vast majority of provision at the moment exists only when we are unwell, and therefore the vast majority of data held by the NHS is about our ill health rather than our lifestyle.  That’s not, of course, to say that such data doesn’t exist, for it does and in huge quantities, but it exists outside of NHS databases.

The report rightly criticizes the NHS for seeming to lack an overall strategy for the effective use of health data, but it then seems to compound that by failing to adequately consider the wider picture, both in terms of general NHS strategy but also, more importantly, in how people are using technology to either stay healthy or improve their health.

At the moment, nearly all of these interventions are initiated by the patient rather than their doctor, and there remains precious little opportunity to share this with one’s medical team, much less for any actionable insights to be gained from it.  Of course, doctors could quite rightly argue that they’re struggling with the burden of electronic medical records, much less receiving a deluge of data on people that aren’t even sick, but it seems realistic to expect AI-driven services to be developed to help identify key trigger points within that data to support better and faster decisions.

This can only occur if that data is integrated and made accessible however.  Alas, there seems no will or intention to create such a marketplace for health data, and therefore it’s hard not to assume that enormous possibilities are being overlooked.