NHS needs to better understand patients’ fears over ‘Care.data’

NHS England has done what can only be described as a poor job of communicating its plan to share patients’ GP records under the Care.data initiative showing a clear lack of understanding about people’s concerns.

lucy tesseras

Polls show that despite a campaign that was supposed to see information delivered to all 26.5 million households in England just one third of people are actually aware of what is being proposed. NHS England claims it is actually more than half but either way it is not nearly enough.

More worrying though is the fact that 40 per cent of GPs say they themselves plan to opt-out of the scheme, according to a survey by medical publication Pulse, which raises even more questions.

Under the Care.data plan patient information from GPs’ surgeries will be shared and held in a central database for the first time – although it will be anonymised or pseudonymised – which supporters say will improve standards and enable much better research into new medicines. And it should be noted that it is already common practice for patient data from hospital records to be shared in a similar way.

The main concern, understandably, is one of privacy. Patients are able to opt-out should they wish – although it’s still unclear how easy this will be – but people are anxious that doctor-patient confidentiality will become a thing of the past and that their personal details will be made public.

And it’s a problem with some weight considering the Information Commissioner has recorded more than 2m “serious data breaches” since 2011, which hardly instils confidence.

I for one have not seen any information about Care.data in the post or through any other channel, which considering the campaign’s slogan of ‘Better information means better care’ makes it almost laughable and removes what little credibility the campaign might have had.

As a result of the backlash from patients and medical organisations alike the NHS has delayed rolling out of the initiative for six months giving it more time to communicate the proposition to those people who feel under-informed.

Although the campaign started last year, the hard-to-come-by leaflets were only sent out in January, so even if they had reached all residents in England as intended it is not nearly enough time for people to get their heads around what is a complicated and contentious change in policy.

And is a simple leaflet really enough? The NHS maintains this is just one element of a wider campaign but even those that are aware of the proposition still have serious concerns. The NHS has a long way to go if people are to accept the change and a lot more research needs to be done so it can improve its communications strategy and reach people in the way they want to be reached.

While many remain angry and confused the one thing NHS England has got right is the importance of listening to feedback and (to some extent) taking on board what people are saying.

Tim Kelsey, the national director for patients and information at NHS England insists that the organisation is now “determined to listen to what [patients] tell us” although it looks like those against the change happening altogether will be fighting a losing battle.

The NHS now has a massive job on its hands to properly inform patients if it is to have any chance of getting the general population on board.

Pushing back the roll out doesn’t remove the problem or alter people’s fears by any means but the additional time will give the NHS the opportunity to adjust its approach and explain the proposition properly.

Whether that goes any way to alleviate patients’ concerns and win over the opposition remains to be seen, but if the communication job is done correctly this time round and addresses the issues raised at least people will have all the information they need to make an informed decision.

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