19 February 2014


A recent post noted concerns regarding the UK care.data initiative, i.e. proposals to commercialise anonymised/pseudonymised whole-of-population health data gathered from UK National Health Service hospitals and general practitioners on a poorly-managed opt-out basis.

(Another piece on concerns regarding commercialisation of NHS Big Data is here).

The UK Independent now reports that the grand plan has been somewhat delayed
Although leading groups, including the British Medical Association and the Royal College of General Practitioners (RCGP) initially backed the scheme, both have broken ranks within the past week saying that while they back the principle, NHS England needed to do more to guarantee “the support and the consent of the public”. 
Concerns persisted despite a publicity campaign in which information leaflets were delivered to 26 million households in England in January. Polls suggested that fewer than one in three adults recall receiving the leaflets, which were derided as “junk mail” by critics. Despite containing important information, the leaflets were not addressed to individuals and did not contain an opt-out form. … 
Tim Kelsey, NHS England’s national director for patients and information who has spearheaded care.data, said the NHS was “determined to listen”. 
He added: “We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared ... [and] that is why we are extending the public awareness campaign by an extra six months.” … 
A Department of Health spokesman said ministers support the decision to delay the launch. “This is a vital programme which will bring real benefits to patients. But concerns over how this has been explained to patients have been raised which must be addressed,” he said. 
Dr Chaand Nagpaul, chair of the BMA’s GP committee, said it was “only right” that the public “fully understand what the proposals mean to them and what their rights are”. 
“With just weeks to go until the uploading of patient data was scheduled to begin, it was clear from GPs on the ground that patients remain inadequately informed,” he said.
The Independent comments
The pause will allow the NHS more time to inform people about “the benefits of using the information, what safeguards are in place, and how people can opt out if they choose to,” officials said. 
The Department of Health has grown increasingly concerned in recent weeks that NHS England has not sufficiently reassured the public – nor the medical profession – about how the care.data programme would benefit patients. Critics have also warned that the private data, which will be held centrally in a “pseudonymised” form, could be vulnerable to hackers who would be able to identify individual patients.
In France, meanwhile, the Commission nationale de l’informatique et des libertés (CNIL) reports -
On 3 January 2014, the CNIL’s Sanctions Committee issued a decision against Google for infringing several provisions of the French Data Protection Act. It consequently ordered the company to pay an administrative fine of 150.000 € and to publish a communiqué referring to its decision on the homepage « www.google.fr ». 
The company had requested the Conseil d’Etat (the French High Administrative Court) to suspend this publication order. In a ruling dated 7 February 2014, the judge rejected this request. 
Google must publish this communiqué for a period of 48 hours in accordance with the modalities set by the Sanctions Committee. 
This decision does not prejudice the final claim against the decision that is still pending in the Conseil d’Etat.