Without Care.data “we won’t have a health service for much longer,” says NHS

Without the care.data programme, the health service will not have a future, said Tim Kelsey, national director for patients and information, NHS England.

Without the care.data programme, the health service will not have a future, said Tim Kelsey, national director for patients and information, NHS England.

“Care.data is the beginnings of something that without, we won’t have a health service for much longer,” he said at the BCS National Health IT Conference (HC2014) in Manchester today.

Kelsey said he is already seeing trends of local health services using data, but he said this needs to happen on a national scale.

“We should be pretty optimistic,” he said. “The social movements seen in so many other parts of our life, where the customer takes control of their own destiny with data technology, is already happening in health care. The challenge is to take the positive decision to empower those local decisions.”

He pointed to a conversation with a GP in Tower Hamlets, who has been sharing routine data about immunization of children. Tower Hamlets is a disadvantaged area with a low immunization rate but with high childhood disease. Kelsey said the “honourable, transparent competition between GPs” which came about sharing data, saw the area see an increase of 74% immunization to 95%, and being close to eradication of the disease.

“They themselves attribute that to nothing more complex than sharing data,” said Kelsey. “There are good examples of how people are just getting on with it, with the tools of our society, but we’re slow at getting that at scale.”

NHS England announced its plans to expand the collection of patient care data from hospitals to include general practices in January. The plans aimed to improve research on data on disease and treatment patterns.

But failures to properly educate the public has now seen the scheme been put on hold for six months.

At a health committee meeting to discuss the care.data debate in February, MPs accused Kelsey of scaremongering after he said that if 90% of patients decided to opt out there would not be a health service for much longer.

He repeated this notion again today and said the ongoing care.data debate was an important conversation.

Kelsey said the reason the NHS decided to delay the care.data programme was so the organisation could have more time to have these conversations, because it couldn’t guarantee that patient data would be used for the purposes of improving healthcare.

Legislation has recently reached the House of Commons which Kelsey said does provide the statutory guarantee that data would be used for this purpose.

“I think this is a turning point for a different kind of contract between us and the citizens of this country about a properly shared understanding of benefits and risk on the one hand of data sharing and the guarantees on the other about what the use of the data will be.”

Kelsey said it was a “shaming fact” that the NHS doesn’t know much about the quality of care at a GP level, and how that patient may interact with a hospital.

“For some people this is to some extent unsettling, but it’s a debate we should have had years ago,” he said. “We know the act of sharing hospital episode data has demonstrably improved service, we need the same level of insight outside hospital.”

He also said the poor diagnosis rate of colon cancer in the UK, compared to the rest of the EU is down to data. “It’s life enhancing data sets – we absolutely need them.”

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I respectfully suggest that if care.data is as critical as stated in this article (and I fully suspect it is) that the records must be suitably and robustly protected...yes, that means full anonymisation and encryption, in transmission and at rest. The ability to identify to postcode level and sell the data to commercial companies is complete and utter madness. I want my medical history to be available to clinicians when and where needed in order for me to receive the right treatment based on informed clinical judgement, but I have to trust the NHS to get access control and privilege management right, and to know who accessed what, why and when, where and how. So Mr Kelsey, protect it, anonymise it, encrypt it, know who is using it and why, ensure that it doesn't leak, and don't for goodness sake, sell it!! Then have a proper publicity campaign to sell the benefits and reassure the population, but not just a leaflet drop that goes in the bin with the takeaway menus and double-glazing flyers without ever being read. When this is done, you will definitely have my sign-up. Oh! nearly forgot: make sure that nobody can ever again sell unsanitised ex-NHS
PC's on an auction site. The ICO's Monetary Penalty notice on NHS Surrey, dated 18
June 2013, makes for very interesting reading and provides a case history
of what not to do. It's big data, but it's not rocket science!


I notice that Tim Kelsey has stopped saying that "we have no idea how many patients have chemotherapy in the NHS" as a reason to have care.data - perhaps because people have pointed out to him that we do know (http://www.chemodataset.nhs.uk.... I have yet to see an example of where "big data" can produce better results than targeted research. And I would love an explanation of the last paragraph: "the poor diagnosis rate of colon cancer in the UK, compared to the rest of the EU
is down to data" - can Tim show me that the rest of the EU has better diagnosis rates because they have better data sets? Please let me know how this works. And what exactly does he mean by "life-enhancing data sets". It all sounds a bit like management-speak gobbledegook - if you say something with lots of words in people will believe it - but there is no logic, evidence or truth as far as I can see.


It's also alarming that Kelsey is repeating the myth that the rejection by the public of care.data is due to "failures
to properly educate the public"

Who knows why thousands of people went to their GPs to opt out. Not I expect because they weren't educated. Any lack of public education is due to the government hoping that the 'uneducated' would not notice that their data was being stolen. It was the 'educated' that opted out.

There are substantive arguments against care.data and by pretending to themselves that the objectors are 'ignorant', Kelsey et al are showing that it is unlikely that they will address them.