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Tim Kelsey, the man behind the controversial Care.data NHS patient records database, announced in early September 2015 that he will be leaving his role as director of patients and information at NHS England, where he led the drive towards a digital healthcare service.
When Kelsey came into the role in 2012, he soon established himself as driven and full of promises, manifested through claims that seemed outrageous to some and courageous to others.
To many people, Kelsey is like Marmite – you either love him, or you don’t. What cannot be argued, however, is that he leaves behind a legacy of NHS IT projects, including Code4Health, patient access to online medical records, paperless NHS and, perhaps most notably, Care.data.
Many of these projects have other great leaders behind them, with NHS England technology director Beverley Bryant leading the drive towards paperless with remarkable effort, and head of business systems Richard Jefferson taking on Code4Health. However, Care.data has always been Kelsey’s baby, and his departure raises questions on the future of the much-debated programme.
Doubts and delays
With Kelsey leaving to take up a job with Telstra Health in Australia, the question remains: Who is brave enough to pick up the pieces of the Care.data programme? Dogged by controversy, delays and outrage among the public and privacy campaigners, the project has not been as straightforward as first envisioned.
Originally, the project was established to expand Hospital Episode Statistics (HES) – a data warehouse containing details of all admissions, outpatient appointments and A&E attendances at NHS hospitals in England – and link them to other datasets, beginning with GP data, before rolling it out further. The datasets would be available to researchers and pharmaceutical companies and fill the holes in information about patients and quality of care.
The potential benefits of Care.data are clear, such as better analytics to understand health trends, feeding into improved preventive healthcare and research into new drugs, but NHS England and Kelsey were criticised for brushing off the public’s concerns about data privacy and ploughing ahead with the project.
The trouble first began in 2013, when Care.data was due to start. Lack of information around what was happening led to uproar among the public and the media, with accusations that the programme was being pushed through without explaining the implications for highly sensitive patient records.
To rectify the situation, NHS England began an education campaign, which consisted of sending out a leaflet to every household in England. The leaflet, often delivered hidden away in between a Chinese takeaway menu or other junk mail, only found its way to a third of households. Another big mistake was failing to include any information on the risks of the data being shared.
While privacy campaigners argued that patients should have the choice to opt in, rather than NHS England assuming their participation and expecting them to opt out, Kelsey argued that Care.data would have to be opt-out “to have as much data as possible”, further claiming that without Care.data “we won’t have a health service for much longer”.
In February 2014, the programme was put on hold for six months following widespread criticism. It was due to start again that autumn, with 500 GP practices selected as pilot sites, but was put on hold yet again. Kelsey said the project would not subscribe to “artificial deadlines” and the extraction of patient data would only begin when it was ready. In June 2015, the programme began again, with four areas chosen as pathfinders to trial the project.
Kelsey has repeatedly promised to listen to the public’s concerns and, just as he leaves the NHS, it seems he finally has. Earlier in September, Care.data was paused again while Fiona Caldicott, the national data guardian for health and care, issued guidance on how to word a new model of consent and opt-outs for the programme.
“There can be no assumptions made about today’s citizens. They have a right to know and object about how their data is used. Their understanding and choices must be actively engaged with,” said Caldicott.
“Then we can use information for its enormous potential benefits. Without that trust and openness, people will tend to believe the worst of motives.”
According to NHS England, no replacement for Kelsey has yet been decided, but Phil Booth, co-ordinator of campaign group MedConfidential, said “serious questions of consent and transparency” in NHS England remain unresolved.
“We need new leadership. Kelsey’s whole directorate was toxic and was probably a bad idea in the first place, given how fundamental information is to the operation of the NHS,” he told Computer Weekly.
However, Booth said he is hopeful Fiona Caldicott will provide a “safe setting” for patient data and meaningful consent. The challenge for NHS England now is whether Care.data can recover from the negativity surrounding the programme that will inevitably be part of Kelsey’s legacy.
Care.data - a timeline of troubles
- January 2014: NHS England expands patient data collection from hospitals to include general practice, raising data protection questions.
- February 2014: NHS England comes under increasing pressure from medical groups to reconsider roll-out of Care.data scheme.
- February 2014: NHS England admits to MPs that it has failed to explain the benefits of Care.data to patients.
- March 2014: Without Care.data, the health service will not have a future, says Tim Kelsey of NHS England.
- April 2014: Up to 500 GP practices expected to trial the collection of patient data as part of the delayed Care.data project.
- May 2014: NHS England abandons plan to roll out controversial Care.data patient records sharing scheme by autumn 2014.
- June 2014: The British Medical Association (BMA) voices concerns that the Care.data programme should be explicitly opt-in.
- December 2014: An independent NHS watchdog raises 27 questions about the Care.data project, saying they must be answered for it to proceed.
- December 2014: NHS Care.data scheme faces more delays due to concerns over lack of publicity and clarity of the proposed programme.
- June 2015: NHS England Care.data project set to restart as trials to upload patient records to a central database are ready to proceed.
- September 2015: Trials to upload patient data from GPs to central Care.data database are put on hold for the fourth time as the government works on opt-out model.
- September 2015: NHS England’s digital chief Tim Kelsey announces he will leave in December 2015 to take up a role with Telstra Health in Australia.