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Reform report highlights need for ‘fair exchange’ in use of healthcare data

02/01/19

Michael Cross Correspondent

Everyone seems to agree that the NHS has a vast wealth of data about the population; but exploiting that wealth is turning out to be more difficult than expected - at least when it comes to commercially profitable innovation.

Laptop on doctor's desk

Thanks to government blunders and the cavalier behaviour of overseas based web giants, patients are sceptical about sharing their data. 

A new report by thinktank Reform, Making NHS data work for everyone, proposes government actions to tackle this attitude by creating a sense of “fair exchange”. However, Health Secretary Matt Hancock’s enthusiasm for data enabled innovation will not be enough.  

Reform points out that several uncertainties remain. Among them is the question of what the NHS’s data library is actually worth.

The thinktank points out a couple of difficulties with this. Most of the personal data collected by the NHS is for the purpose of direct care, which has advantages for accuracy – records produced as a by-product of care are better than those created later for audit or billing – but will not necessarily contain the data items required for research.

Failure to join up

Meanwhile, individual lifelong records are often patchier than outsiders assume, thanks to the NHS’s chronic inability to join up records with single patient identifiers. 

The Reform authors suggest that IBM’s $1 billion acquisition of Merge Healthcare – a US specialist in health imaging – along with some 5-6 million patients’ records, might be indicative. However, it notes that healthcare data from the US is very different to that held by the NHS’s cradle-to-grave records of a diverse population. The NHS’s databases should be considerably more valuable – assuming that they can be accessed with patients’ consent. 

Another question is whether the NHS can negotiate a good deal with organisations using its data? Reform is sceptical. Among its recommendations is that the Department of Health and Social Care should invest in creating “a new independent unit with legal and business experts to help NHS organisations negotiate fair and proportionate partnerships”. 

Thirdly, will patients accept the idea of sharing their data? Here is the real problem. Reform’s report notes the House of Lords AI review as pointing to public concern about companies “making a profit at the expense of both the NHS and patients”.

Indeed, a 2016 study by Ipsos Mori found that 25% of the population did not want commercial organisations to access their data under any circumstances. The care.data fiasco – which led to the dropping of a plan to collate patient data for research purposes – represented “a clear moment where public opinion overturned policy”. 

UK/US distinction

This was followed by revelations that the Royal Free NHS Trust in London failed to comply with data protection law when allowing Google’s DeepMind access to 1.6 million records. Reform concedes that US based web giants are not seen as the most worthy beneficiaries of NHS data: “There is potentially a need to make a distinction between organisations who are headquartered and pay taxes in the UK and those overseas.”

What is needed, the Reform report suggests, is a mechanism for “keeping society in the loop”. At present patients are not involved in discussions about data sharing partnerships. While they are given the opportunity to opt out of data being shared for purposes beyond direct care and may be asked for their explicit consent when identifiable data about them is accessed for secondary uses, they play no part in any conversation about what fair exchange with the private sector might be. 

The report recommends that this should change, and people should be given an opportunity to engage in such conversations. The idea is that, the more people learn about what is involved, the more open they become. It cites members of citizens’ juries changing their mind over three days of deliberation, becoming more positive towards data sharing for public health benefits. 

On this basis, “the  Department of Health and Social Care should, in conjunction with Caldicott [data protection] guardians, NHS organisations and industry representatives ensure that a dialogue with the public is set at a local level to discuss commercial models”. 

There is one snag: the sort of people likely to sign up to these dialogues are those with strong feelings about the sharing of data. In the current climate, the strong feeling is more likely to be hostile, especially to commercial exploitation. The process of bringing society into the loop may have to begin at a much earlier stage. 

UKAuthority's Digital Health & Social Care conference, taking place in London on 14 February, will focus on the issues around the effective use of health data. More details from here.

Image by Free-Photos (Pixabay), CC0 via Wikimedia Commons

 

 

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