Controversial care.data programme closed: What did we learn?

12 Jul

by Rebecca Hays, Research Associate in Multimorbidity theme

careData

After a series of delays, the care.data programme has been closed for good. The decision to end this controversial project was announced following the publication of Dame Fiona Caldicott’s review of health and care data security, consent and opt outs.

The height of the controversy came in February 2014, when the programme was put on hold following NHS England’s highly criticised attempt to inform the public about care.data through a national leaflet drop. Issues with this mail out and the lack of clarity about the project became the subject of many news stories, and a popular topic on social media.

My colleague Gavin Daker-White and I were following the debate on Twitter, where a wide range of views and opinions were being expressed. Tweets highlighted the potential benefits of care.data, revealed worries, provided links to more information, and instructions to opt-out. To better understand the strengths and criticisms of the programme, we undertook a qualitative analysis of tweets containing the hashtag #caredata.

Those for and against the programme shared a range of concerns, including the issues reviewed by Dame Fiona Caldicott. Tweets also identified communication failures, confusion about care.data, and a lack of patient-centeredness. We found these concerns were eroding trust in the healthcare system, which, if ignored, could put patient safety at risk.

Many people will be relieved that the care.data programme has been closed but this is not the end of the story for data sharing in the NHS, and lessons need to be learned. Our work also identified the potential benefits of such projects, for patients and other stakeholders, and recommendations for their design and implementation.

For future programmes to be successful, they must actively engage and involve patients in discussions and decisions about who can access their data and how it can be used. People must also be fully informed about both the risks and benefits of data sharing. Thus, we strongly support Dame Fiona Caldicott’s view that “A key aspect of this work must be a dialogue with the public.”

Note:

Rebecca and Gavin’s paper, “The care.data consensus? A qualitative analysis of opinions expressed on Twitter” was published in BMC Public Health in 2015. A plain English summary [pdf] of this publication is available on our website.

 

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