Updated Before the UK government launched its programme to extract patient data from GP systems in England and Wales – now twice-delayed – the National Data Guardian (NDG) warned the government could be "perceived as trying to introduce changes 'under the radar'."
The warning came from Dame Fiona Caldicott, architect of the current system for protecting patient confidentiality in England and Wales, and NDG until her untimely death in February 2021, before the programme described as the biggest data grab in NHS history was launched.
The NDG's annual report, published this week [PDF], said important lessons were learned from the past when planning and rolling out the new GP Data for Planning and Research programme (GPDPR). In 2016, the NHS scrapped an earlier system for sharing GP data, care.data, after spending £8m on the controversial programme.
"Dame Fiona felt it was important to learn the lessons from the care.data programme, which did not earn the trust of some GPs and the public and was delayed and subsequently abandoned," said the report, which covers the period of the year to the end of March 2021. "This led to the NDG underlining the need for effective communications and engagement about GPDPR… The NDG expressly warned that the programme must not risk being perceived as trying to introduce changes 'under the radar' and encouraged the programme to speak clearly and with confidence about the purpose of the programme, and what would and would not be done with the data, to secure trust and understanding."
Did it listen?
Nonetheless, the GPDPR programme was launched in May 2021 with the news that it gave patients little more than six weeks to opt out of the extraction process, which would see personal health data extracted from GP systems to a central store accessible to private research companies, leading to an outcry from campaigners. They claimed patients were unaware of the changes publicised only by website information, poster for GPs' surgeries and a few tweets.
The extraction was then delayed to September, and has since been delayed indefinitely until doctors and patients are better informed. Even after the media attention surrounding the delays, and a debate in Parliament on the plans, consumer watchdog Which? found 45 per cent of people in England were unaware of the proposals for their medical records, equating to around 20 million people.
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Observers might question whether NHS Digital had heeded the NHS grandee's warnings about "the need for effective communications and engagement about GPDPR."
In response, NHS Digital pointed The Register to information released in July. It said it was now committed to going ahead with the extraction only after a "campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices."
It also promised to offer patients the option to opt out at any stage, with historic data being deleted even if it had been uploaded. It added that the external researchers would only access the data through a Trusted Research Environment, whereby they execute queries on the data in situ, rather than moving it for analysis.
NHS Digital said there had been "extensive engagement with partners including the BMA and RCGP, and the NDG, ahead of the launch in May," and that it had issued a press notice, social media content and comms to GPs at the time of the launch. ®
Updated to add on 23 August 2021:
As first pointed out in The Observer, an extra 1.2 million folks in England opted out of sharing their data with the NHS in July compared to figures seen the month before, as per NHS Digital's figures (see below).
There were 3,032,917 national data opt-outs as at 1st July 2021, an increase of 1,275,153 compared to 1 June 2021.