Care.data campaign – not off to a flyer…

Earlier this week Pulse reported that NHS England had announced a major publicity campaign about their plans to extract and share confidential patient information from next year.

The move comes following tremendous pressure from the General Practitioner Committee (GPC) and campaign groups maintaining that patients are not being adequately informed of the fundamental changes in how the NHS will be using their data. It also comes as a huge relief to many GPs who, until now, had the sole responsibility to inform their patient about care.data or run the risk of facing legal action under the Data Protection Law.

There has been a lot of controversy around patient confidentiality concerns, as care.data will see the Health and Social Health Information Centre (HSCIC) routinely extracting identifiable patient data from GP practices and hospitals, which can then be shared in identifiable or de-identified forms to other sections of the NHS and to third parties, such as researchers. Many have also argued that health secretary, Jeremy Hunt’s promise of the right to opt-out will be meaningless unless the public is adequately informed about the care.data scheme.

As part of the joint £2m public awareness campaign being run by NHS England and the HSCIC, 22 million homes will receive a flyer which will set out how care.data will work and how patients can opt out, while also setting out ‘the benefits it will bring’.

With my marketing hat on, I question whether a door drop is an adequate way to inform the public about how their personal data is being harvested by the NHS and potentially sold on to other organisations, such as pharmaceutical or insurance companies.

This newly announced publicity campaign has been modeled on the information campaign for the Summary Care Record (SCR), which interestingly, was evaluated by a University College London (UCL) research team. It concluded that, “despite an extensive information programme to inform the public in early adopter sites about the SCR, many patients interviewed by the UCL team were not aware of the programme at all”.

To put it more bluntly, the flyer will probably end up unread in the bin, as if it were junk mail. This raises important questions about the ethics of an ‘implied consent’ model for care.data.

NHS England and HSCIC need to do more to gain the trust of the public through adequate information and education about care.data. This should include a national TV advertising campaign, an open and frank debate in the media in addition to social media campaigns. Key to the success of these campaigns will also be the ability to reassure patients and prove to them that the right processes and technologies are in place to protect their privacy.

As Kingsley Manning, chair of HSCIC, rightly pointed out, the benefits of care.data can “only be delivered in the context of public understanding and trust” and having viewed the campaign plans to do this, it looks like there is still much work to do to ensure the public feel that they can put enough trust in the service to warrant them being part of care.data.