Deal or No Deal? Harnessing the Social, Economic and Commercial Value of Healthcare Data

11 December 2018
By Annemarie Naylor
Director of Policy and Strategy
Future Care Capital
Annemarie Naylor, Director of Policy and Strategy, Future Care Capital

Scholars differ in their interpretation of the purportedly Chinese adage ‘may you live in interesting times’. For some it is a curse and a reason to feel anxious or fearful whilst, for others, it connotes opportunity and excitement. Either way, it seems to sum up perfectly the sentiments of a seemingly irreconcilable nation at this politically tumultuous time, and it is, perhaps, fitting to consider public attitudes toward the fourth industrial revolution in much the same vein - in particular, where harnessing the value of healthcare data is concerned.

On the one hand, we appear to have every reason to concern ourselves with the potential for healthcare data about us to be hacked, used and/or abused – whether by malevolent foreign powers engaged in what some suggest amounts to a new ‘arms race’ or by corporate data monopolies left to run amok in our digital wild west. On the other, new technologies fuelled by healthcare data seem poised to revolutionise our predictive capabilities, the preventative measures used to bring about public health and the medical diagnostics that are relied upon by the NHS. It is also said that they will help us to discover and better target the ground-breaking treatments of the future.

The UK Government’s efforts to square this circle are to be welcomed – or, at least, in the interests of being topical, whilst necessarily imperfect, the attempt to offer something for everyone is manifest. In the name of privacy and protection, we have seen the introduction of a new Data Protection Act and the National Data Opt-Out Programme this year. The Government has also followed-through on its commitment to establish a Centre for Data Ethics and Innovation (CDEI) and published a first Code of Conduct for Data-driven Health and Care Technology. Meanwhile, significant ‘Grand Challenge’ funds were made available for Artificial Intelligence and Data back in the Spring and, only last week, the latest Life Science Sector Deal heralded significant investment in the pharmaceutical and health tech sectors – encouraging the research and innovation upon which future breakthroughs depend.

There is still some way to go before a digital contract that is fit for purpose in our brave new world is firmed up between individual citizens, the state and private enterprise. It might, for example, involve the CDEI being placed on a statutory footing or, else, the Government’s Code of Conduct being mandated before long. It could, equally, entail a commitment on the part of Government to ring-fence and reinvest any revenues derived from NHS data deals to improve patient outcomes.

Irrespective, its success and longevity are reliant upon an open and honest dialogue with the general public to gauge their appetite for and attitude towards commercial usage of the healthcare data the NHS stewards on their behalf. So, the Government’s commitment to engage people in refining the principles according to which healthcare data-driven deals will be entered into by the NHS must be regarded as positive. Whether the general public will prove supportive of the data deals that result, though, remains to be seen.

Postscript

Future Care Capital has contributed to numerous reports, parliamentary debates and stakeholder events on this topic. We are currently engaging broad-ranging stakeholders in the course of preparing a discussion paper to further stimulate debate about whether and how any revenues derived from such activities could be harnessed to benefit the nation’s health – including the potential to establish a data-driven Sovereign Health Fund.

There is still some way to go before a digital contract that is fit for purpose in our brave new world is firmed up between individual citizens, the state and private enterprise