Thursday, March 13, 2014
The Discussions Regarding The UK Care.data Program Is Continuing. Really Interesting Stuff.
The following have appeared recently.
25 February 2014 Rebecca Todd
The care.data programme should be opt in not opt out, well-known health data expert Professor Brian Jarman has said.
Professor Jarman is director of the Dr Foster Unit at Imperial College London and developed the methodology for the Hospital Standardised Mortality Ratio.
In an interview with EHI, he said the care.data programme, which is being developed to link hospital and GP datasets and share information with researchers and others, should be set up on an opt-in basis.
He has shared his views with NHS England’s chief data officer Geraint Lewis and director of patients and information, Tim Kelsey. However, he does not sense much enthusiasm for the idea.
Care.data involves extracting a new monthly dataset from GP practices and linking this with other datasets, such as the Hospital Episode Statistics, within the ‘safe haven’ of the Health and Social Care Information Centre.
Patients can opt-out of their data extracted or shared by telling their GP; otherwise their consent to the extractions is implied. NHS England has been running a leaflet campaign about the project, but this has been heavily criticised, and the first extractions were recently delayed until the autumn.
Professor Jarman pointed to the way Scotland is handling the creation of a similar new database of GP data, called the Scottish Primary Care Information Resource, as a better way forward. Patients choose to opt-in to the resource, and GPs have a choice over which aspects of the programme they participate in.
“I would much prefer to do it the way the Scots are doing it and allow people to opt-in after being fully informed about the pros and cons,” Professor Jarman said.
NHS England announced last week that it would delay the start of GP extractions by six months to allow more time for the benefits and implications of care.data to be explained.
Professor Jarman argued that during this time everybody should be sent an addressed envelope clearly explaining the care.data scheme, with a paid-reply envelope and opt-in form.
“I think in an informed system you would get about half the population, if you really did it well and made it easy to reply and opt-in,” he said. “Fifty per cent would be an enormous dataset and you could start working with that.”
As the scheme gained trust, the number of people consenting to their data being extracted would likely increase, he added.
Professor Jarman said the Hospital Episode Statistics have been available for many years and one of the key issues has not been about availability of reliable data, but getting people to take notice of it.
Lots more here:
There was also this article appear recently.
26 February 2014 Lis Evenstad
NHS England will use the six month delay to care.data to launch a re-engagement programme to get the public on board.
Giving evidence about the programme to combine hospital, GP and other data to the Commons’ health select committee yesterday, Tim Kelsey, NHS England’s director of patients and information, acknowledged there had been problems communicating the project.
“We had a lot of confusion, suspicion and anxiety,” Kelsey told MPs. “We are going to be launching a very exciting programme which specifically articulates the purpose of this programme. That is why we have this extension.”
The care.data programme will link an expanded set of Hospital Episode Statistics with new datasets, starting with an extract from GP practices, within the ‘safe haven’ of the Health and Social Care Information Centre.
It was due to start GP extractions last autumn, but this was pushed back to March this year. Kelsey announced earlier this month that the launch date had been pushed back a further six months, following widespread media coverage and further concerns from GP bodies.
NHS England’s information campaign has included a £1m leaflet drop to every household in the country. But the leaflets have been criticised for not containing clear information about what data will be collected, how it will be released to researchers and others, and how people can opt-out.
Kelsey told the committee that NHS England will engage with stakeholders over the next few weeks to deal with the issues.
For those who came in recently the care.data program is designed to automatically extract a data-set from UK GP systems to be used for a range of monitoring and performance management purposes for the National Health Service.
I blogged on this recently here:
With the political heat and privacy alarm that came from the original proposal it seems very sensible to back off a little and to make sure there is enhanced clarity and explanation as to what is going to be done, who will use the data, how it will be protected and so on!
With the recent leak of immigration department personal asylum seeker data in this country there would certainly be some anxiety with this sort of proposal without some tough safeguards.
This is a program to keep an eye on over the next year or so.
Posted by Dr David More MB PhD FACHI at Thursday, March 13, 2014