Care.data director Tim Kelsey: the mastermind behind the NHS GP data project

Tim Kelsey
About one million people opted out of the Care.data scheme pre-emptively before it launched © YouTube/NHS England

Who is Tim Kelsey, the top civil servant in charge of the government's Care.data scheme?

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Update: On 17 September 2015 Tim Kelsey has announced he is set to leave the UK - and NHS England - in December, to become commercial director of Australian telco Telstra. In March 2015 Telstra bought Dr Foster, a healthcare analytics company Kelsey set up in 1999. NHS England is (understandably) yet to confirm who will take over when Kelsey steps down. 

If you’ve been in the UK for the last two years, you have might have heard of Care.data, a troubled government project to extract individuals' GP data and combine them with hospital records in a database

However it’s less likely you’ve heard of Tim Kelsey, the 50-year-old NHS director ultimately responsible for the scheme. 

Despite being lauded for leading attempts to open up public sector data, Kelsey has proved a divisive figure involvement in the Care.data initiative. He has also courted controversy following the sale of a company he partly owned to the Department of Health in 2006 - apparently for double its estimated value - leading to criticism from MPs.

Kelsey does not have a typical civil service story.

Born in 1965, he had a top quality education at prestigious private school Wellington College before completing a history degree at Magdalene College, Cambridge.

After graduating he embarked upon a career in journalism for the Independent, BBC, Channel 4 and Sunday Times with stints in Turkey and Iraq, notably covering the 1990 Gulf War.

Kelsey later became an entrepreneur, founding healthcare data company Dr Foster in 1999 with Financial Times journalist Roger Taylor and Stanford graduate Roger Killen. The company now provides analytics services to 85 percent of UK hospitals.

He was appointed by the NHS in 2006 to set up the health service’s information website ‘NHS Choices’.

Kelsey moved to the Cabinet Office in 2012 to become the UK’s first transparency and open data director, personally appointed by PM David Cameron.

He returned to NHS England just months later as patients and information director, a post he still holds.

Care.data mastermind

However this bland version of his CV disguises what a controversial figure Kelsey is.

He is the main driving force behind Care.data, formally launched in May 2013, although he omits to mention the scheme to collect GP records anywhere on his LinkedIn profile.

Care.data recently restarted with several small-scale pilots this year, but it has been beset by controversies since launch. It was recently labelled ‘unachievable’ by Whitehall watchdog the Major Projects Authority, which said it should have its future reassessed.

It was supposed to be up and running in all 8,000 GP practices by 2014.

However it was delayed after GP, privacy and patient groups raised concerns about security and the fact only a small minority of the public were aware of the scheme, which requires people to opt out if they do not wish their data to be used.

About one million people opted out pre-emptively, although the NHS was recently forced to admit it has not yet processed their objections.

Despite being the ‘senior responsible owner’ (civil service jargon for the most senior person in charge) of the Care.data scheme, Kelsey has managed to avoid much real criticism for the project’s problems.

When blamed, he has generally reacted with surprise and irritation, both in appearances in front of select committees and his activity on Twitter, which has decreased greatly since the project started to go awry.

There was a minor media flurry after Kelsey featured in a mocked-up ‘Downfall’ video on YouTube, which parodied Kelsey as Hitler during his last days in the bunker: an angry, delusional figure unable to understand why his plans had gone wrong.  

It was retweeted by his then-boss NHS chief David Nicholson, who was pressured into apologising, tweeting ‘You’re doing a great job X’ to Kelsey shortly afterwards.

Divided opinions

Despite all the problems with Care.data, Kelsey has weathered the storm so far. He therefore presumably must still have the trust of his boss, health secretary Jeremy Hunt, and indeed the man who first brought him into the inner circles at the top of government: David Cameron.

Kelsey is admired by many for his role in helping to kick-start the opening up of public sector data and his grand vision for how information and technology could radically improve NHS care.

As architect of the NHS Choices website, which provides advice and information on conditions, treatments and local NHS services, Kelsey has helped to improve transparency on individual hospitals’ mortality rates, reviews by patients and other data on outcomes.

He has a reputation as an intelligent, powerful and effective operator.

However, in public appearances he can come across as dogmatic and bad at taking criticism. He also seems to have benefitted from favouritism and naivety in Whitehall.

Kelsey was certainly helped by the latter in the case of Dr Foster, when a 50 percent stake in the firm - of which he owned 12 percent - was sold to the Department of Health in 2006 for £12 million, double its estimated value.

It was since bought by Australian telecoms giant Telstra in March 2015 for ‘between £10 million and £20 million’ - in total.

The Public Accounts Committee and National Audit Office raised serious concerns about the legality of the health department contract, describing it as a “back room deal” which had been “handed to Dr Foster on a plate”.

The NAO concluded the department had not gone through proper procedures and could not show value for money from the purchase.

Denise Lievesley, the whistleblower who first raised concerns about the contract, was eased out of her job as chief executive of the NHS Information Centre and forced to sign a gagging clause. To this day she remains unable to tell her side of the story.

Tone-deaf

Kelsey has consistently argued releasing data on public services will help to improve them, an idea most of us can get behind.

However he has often seemed tone-deaf to those uncomfortable with the idea of personal medical data being collected and held centrally, with any privacy or security risks that could entail.

In a 2009 article ‘Long live the database state’ in Prospect magazine, he said: “No one who uses a public service should be allowed to opt out of sharing their records. Nor can people rely on their record being anonymised”.

It’s hard to square with his comment, in front of a Parliamentary select committee in 2014: “It is absolutely fundamental that we give people the right not just to access their own data but to do as they wish with them.”

Perhaps Kelsey has changed his mind on privacy and now takes concerns over Care.data more seriously.

Or maybe he has been gently encouraged to be less outspoken, both on Twitter and in the media.

Could Care.data become a success, despite its troubled birth?

It’s possible, although without strong evidence individuals’ data is secure and anonymised, more people are likely to choose to opt out, further weakening the scheme.  

However, without proper thought put into how to improve security, rather than merely boost public awareness, it is possible the problems that surfaced when Care.data was launched will come back to haunt NHS England as it gradually starts to ramp up pilots of the scheme this year.

Either way, Kelsey will remain one to watch. The programme is his brainchild and implementing it seems to be his main mission as a public servant.

Although he is “good at managing upwards”, as one source put it, and very politically astute, one question remains unanswered: what he will do if Care.data fails?

Tim Kelsey’s CV

May 2012 – present: Director of patients and information, NHS England

January – May 2012: Director of transparency and open data, Cabinet Office

2010 – December 2011: Senior expert, McKinsey & Co (leading on the development of ‘consumer propositions in public services to transform quality and productivity’)

2006 - 2010: Chair of executive board, Dr Foster Intelligence

2000 - 2006: Chief executive, Dr Foster (founded with Roger Taylor and Roger Killen in 1999)

1995 – 1999: Deputy editor of the Insight Team, Sunday Times

1989 – 1995: Reporter, Independent on Sunday

1987 – 1989: Freelance journalist

1984 – 1987: Studied history at Magdalene College, Cambridge

1978 – 1983: Wellington College

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