The delay to the launch of the planned NHS database has generated a number of interesting conversations this week.
They range from the instinctive: ‘why on earth would people want to stand in the way of medical progress?’
To the understandable: ‘how can I possibly trust them to hold my data securely?’
To the cynical: ‘is this about making money and not improving health?’
It is the government’s misfortune that this issue landed so soon after the revelations from whistle-blower Edward Snowden. Yet there is a much broader canvas to draw upon when evaluating levels of trust in, and cynicism toward, public institutions today (see Wellcome Trust research here).
As we discussed at our privacy breakfast these revelations have been game-changing in terms of consumer perceptions of online privacy and data security – although we note the Jan 2014 findings from EY suggesting the public trust the government more than business with their data.
Ultimately the government, the NHS and associated stakeholders have failed to carry the public with them – polling from YouGov on behalf of our mutual client the Medical Protection Society suggests that while a majority (54%) are in favour of the NHS collecting and analysing information from patient records, 24% are opposed (even to this anodyne description) and 41% have significant concerns about the way their data may be stored and handled (having been given detailed information about the initiative).
In fact only 5% of the population claim to understand a great deal about the initiative – which is unsurprising as the initiative has been pushed through with the minimum of democratic oversight with the public information campaign limited to a bland leaflet pushed through each door.
Arguably worse than the failure to engage with the public is the failure to carry professional groups with them. We can debate the details of the system, the level of anonymity assured, the range of organisations and businesses to be given access to the data, the strength of the storage facility, the financial implications, the role of business lobbyists and more…..
…..but that is exactly what is needed, an open and accessible debate. The project, part of a much wider programme of inter-related initiatives to promote medical science and genome research has been under way for at least five years, and was criticised by the Public Accounts Committee in 2011 but at no stage has there been a demonstrable commitment to public consultation.
Ultimately if you give people a reason to be suspicious then they will be – and in spades. Thus the absence of transparency creates a vacuum, and as we know (human) nature abhors a vaccum.
Quite what will be achieved in the next six months before the delayed launch is planned go ahead is open to question. As things stand it represents an excellent case study in how not to handle such issues – and it really would be a tragedy if for want of dialogue a breakthrough opportunity was lost.
BBC summary and overview of the delay can be read here
And for background on the separate story about the financing of this project see here