Monday, 10 November 2014

NHS Care.data programme to be tested

Earlier in the year, the NHS decided to postpone its Care.data scheme:
Futures Forum: NHS "Care data" programme delayed...

This was after considerable debate on the whole topic:
Futures Forum: The pros and cons of sharing medical information
BBC News - Care.data: How did it go so wrong?

It seems, now, that there will be several pilot tests conducted around the country:
NHS England selects CCGs for care.data pilot - Government Computing Network
NHS England names care.data pilot programme areas | IT PRO

There is a great deal of concern - from both patients and professionals:
Health data leak fears as controversial patient records plan to pilot in Blackburn (From Lancashire Telegraph)
OnMedica - News - Care.data could harm patient-doctor relationship

Campaigns are underway to ask doctors to automatically opt their patients out of the system:

Doctors urged to adopt default opt-out approach to care.data scheme
ICO: It would be perfectly legal to do so
By OUT-LAW.COM, 27 Oct 2014

A patients' group has urged doctors to automatically opt their patients out of the new "care.data" scheme until the patients give consent for the disclosure of their medical data.

The Patient Concern campaign group said that patient trust in their GPs would be undermined if doctors shared the medical data stored on their systems without consent from patients.

"All GP surgeries participating in the pilot scheme must automatically opt out all their patients," Patient Concern said, according to a report by Healthcare Government Computing. "Then only remove that opt-out when patients give permission."

Data protection laws do not prevent doctors from adopting the approach recommended by Patient Concern, the Information Commissioner's Office (ICO) has said, providing certain conditions are met.

"If GPs choose to opt out all of their patients, then that is an issue for them and NHS England – the Data Protection Act does not prevent it," said strategic liaison group manager at the ICO, Dawn Monaghan, according to a report by health news website Pulse. "However, the Data Protection Act would still require patients to be given a full explanation of the options open to them, and why the GP has chosen to opt them out."

However, the Health and Social Care Information Centre (HSCIC) was given power to compel the gathering of certain patient data gathered from GP surgeries in England under the 2012 Health and Social Care Act. The data is to be added to the patient data already gathered by hospitals in a new database, known as 'care.data', unless individuals opt out.

Data stored in the database would be used to improve health services, but the HSCIC would also have the power to grant third parties access to the data it collects for certain purposes and under certain circumstances, including for medical research, subject to certain privacy safeguards.

Even though the care.data scheme is being driven by the UK government and NHS England and the Health and Social Care Act compels data sharing, it is GP surgeries that are responsible for ensuring that their disclosure of patient records under the scheme adheres to UK data protection laws. This means ensuring patients are suitably notified about the ways in which their data could be processed under the scheme and responding to any requests to be opted out.

Dr Richard Vautrey, deputy chairman of the General Practitioners Committee (GPC), said the burden of informing patients about the care.data scheme should not rest with GP surgeries. "As far as the ICO position is concerned that is technically correct but it puts a huge workload burden on practices, which is not funded, and also places the risk in relation to delivering effective communication to every single patient on to the practice," he said, according to a report by GP Online.

The care.data programme was scheduled to become operational earlier this year but its implementation was postponed amidst concerns about patient awareness of the scheme and their consent to the use of their health data

NHS England has now announced the areas of the country in which the care.data scheme will be piloted.

"The pathfinders will be supported in testing different types of communication with patients in those areas, explaining the benefits and risks of data sharing, and making clear their right to opt out from having their confidential information shared for indirect care," NHS England said. "As part of the pathfinder stage, a variety of communications will be tested with patients which will include an individually addressed letter sent directly to every individual or household from their pathfinder GP surgery, a leaflet and other explanatory materials, as well as e-mails and texts where the surgery also uses these channels," it said.

NHS England stressed that the introduction of the Care Act earlier this year, means that the data collected as part of the care.data initiative "cannot be used for purely commercial purposes such as setting insurance premiums". It said the data would be used to "create a national picture of health patterns so commissioners can study issues such as diagnosis, waiting times and patterns of illness or disease".

Tim Kelsey, NHS England national director for patients and information, said: "We have heard, loud and clear, that we need to be clearer about the care.data programme and that we need to provide more support to GPs to communicate the benefits and the risks of data sharing with their patients, including their right to opt out.”

The campaign group 38 Degrees is urging these tests to be put on hold until a few things are put straight.

38 Degrees Logo

Care.data - the scheme that would give our personal medical data to private companies. It's being rolled out in just a few weeks' time. [1]

But 92% of 38 Degrees members think we should get the scheme stopped until we can make sure our health data won’t end up in private hands. [2] So let’s get going!

The scheme’s being tested in 6 pilot areas before it goes nationwide. [3] We’ll need to throw everything at stopping it in these areas if we want to stop the roll-out. We’ll have to show NHS England that thousands of us will opt out of the whole scheme, if they won’t let us decide who gets our personal data.

So here’s the plan:
  • First we let everyone know it's happening. Thousands of us could call people living in the areas where it's being rolled out first, to tell them about Care.data. We could flyer every house, buy local advertising space and do lots of other things.
  • Next, we help people opt out. We could build a website where people can opt out of Care.data easily until NHS England fix the scheme.
Done right, Care.data could be used to make our NHS better. Our data could be used by researchers to develop new treatments and improve public health. [4] But right now, NHS England won't let us decide who gets our data: NHS doctors and researchers, or private companies.

If the pilot goes well, Care.data will be rolled out across the country. Together, we need to stop it now - and get it fixed - before it goes national. NHS England could change the system so that we can opt out of private companies getting our data. So let’s make sure they do.

The last time NHS England tried to sneakily hand our medical records to private companies, thousands of us threatened to opt out. So they ‘paused’ the project, and it looked like they’d backed down. [5] This time, not much has changed. Their version of Care.data still stinks.

We need to show NHS bosses that we want an NHS that works for us, not private companies. If they don’t change Care.data, the public will opt out.

Thanks for being involved,

Rachel, Susannah, Blanche and the 38 Degrees team

PS: In case you missed it, on Wednesday evening our forests were saved - again! And together we played a huge part in that.

The government was trying to sneak through plans which would have paved the way for our forests to be sold-off. Forest campaigners have been working on this for months. But at the very last minute, after over 150,000 members of 38 Degrees signed a huge petition and thousands of people tweeted at peers, they backed down.

The government u-turned and made changes which mean our forests will be protected – in law. Yay! More info here: http://blog.38degrees.org.uk/2014/11/05/save-our-forests-victory/

[1] Computing: NHS England to forge ahead with 'unchanged' care.data plans:
[2] 38 Degrees blog: 38 Degrees members vote to stop Care.data until it's fixed:
[3] The NHS Clinical Commissioning Groups (CCGs) taking part in the pilot are: Leeds North, Leeds West and Leeds South and East, Somerset, West Hampshire and Blackburn with Darwen
[4] NHS England: The care.data programme - better information means better care:
[5] The Telegraph: NHS medical records database halted amid concerns:

38 Degrees | people. power. change.

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