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NHS not making most of its health data, says think tank

It stands to lose out on revenue suitable partnerships without formal strategy in place

Caroline White

Wednesday, 12 December 2018

The NHS is not making the most of the health data it generates and which is legitimately used by industry for research and product or service development, says a report* by think tank Reform.

It stands to lose out on valuable revenue in the absence of any formal strategy, says a report by think tank Reform, which calls on the Department of Health and Social Care to plug this gap.

The private sector is an important partner for the NHS and has a crucial role in the development of healthcare technologies, providing the skills and know-how to develop data-driven tools which can be used to improve patient care, says the report.

But the NHS generates the data collected by hospitals or GP practices, to build these tools and offers medical expertise to make sense of them- a transaction known as the “value exchange.”

However, there’s little clarity about what a fair value exchange looks like. And this, combined with the lack of national guidance on the types of partnerships that could be developed has led to inconsistencies on the ground, says Reform.

Knowing what the “value exchange” is between patients, the NHS, and industry allows for a more informed conversation about what constitutes a fair partnership, says the report.

A national strategy is needed because it ensures that local bodies are not creating perverse incentives in the system, it says.

Involving the public about how data about them is being used in the NHS is crucial, says the report. There are no suitable public sector models or examples that allow patients to do this, however, and this needs to change, says the report.

Transparency over data quality could be increased and access to data sped up without compromising individuals’ privacy, it suggests.

The government should set up a new independent unit of legal and business experts to help NHS organisations negotiate fair and proportionate partnerships, the report recommends.

Annemarie Naylor, director of policy and strategy, at charity Future Care Capital, commented: “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.”

The government’s efforts to bolster privacy and protection were welcome, she said, citing 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 and published a first Code of Conduct for Data-driven Health and Care Technology, she added.

Funds have been made available for Artificial Intelligence and Data and last week’s latest Life Science Sector Deal heralded significant investment in the pharmaceutical and health tech sectors, she suggested.

But she said: “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.”

*Making NHS Data Work for Everyone. A report prepared by Reform, December 2018.

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