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Patients miss out on bowel cancer screening after opting out of care.data, claims Caldicott



At least 100 patients who opted out of the record sharing before care.data was delayed in February last year may have been missing out of invitations for cancer screenings and other programmes, a parliamentary committee was told.

Speaking at a health committee meeting yesterday, the newly appointed national data guardian, Dame Fiona Caldicott, said that some patients had said they did not want the NHS information centre sharing data with other parties, but this meant they were not being called in for certain services.

But the NHS Health and Social Care Information Centre has subsequently refuted Dame Fiona’s ‘100 patient’ figure, explaining these patients had used a different opt-out that did not affect patient share, and it refuted the claim that patients had already been affected.

At the same meeting, the senior responsible owner for care.data, NHS England’s Tim Kelsey, said that 80 practices, in three CCG areas, have so far signed up for the pilot scheme , and one area was yet to start.

He also said that pilot practices will be paid for the costs of the letters they send out to patients, but not for the work they are doing to send out the letters.

The pilot stage – running in four regions covering around 250 practices – is one of a number of new features added to the care.data programme during its overhaul in the past year.

The scheme was delayed after the GPC and RCGP raised concerns that the public were not sufficiently informed, and Pulse revealed one GP, Dr Gordon Gancz in Oxford, had his contract threatened for refusing to allow data extractions without patients’ express permission.

Before the delay, patients were given the option to prevent GP practices distributing their information and to prevent the Health and Social Care Information Centre distributing information.

Committee chair and former GP Dr Sarah Wollaston MP revealed that those who opted out of information leaving the information centre would also no longer receive invitations to attend bowel screening services.

Responding Dame Fiona explained that details were still developing but as she understood it those affected would be sent an individual letter explaining the consequence of their opt out.

She told the committee: ‘As I understand it from [Kingsley Manning, chair of the HSCIC] in the case of type 2 objections [around information being distributed from HSCIC] which have already been lodged with GP practices… they found in the letter that there are just about 100 patients who had made that objection already.

‘And because of the implications that you just outlined, they’re writing to all of these patients to discuss with them, the effects of that opt out and what they want to do in response to it. So they may want to make a different sort of decision, but it’s something that’s only been brought to your attention, I think all of our attention in the last 24 hours.’

They said that this option had been removed under the revised programme.

Mr Kelsey explained that three of the four pilot areas had started recruiting practices for the programme.

He said: ‘At the moment, 80 practices in three pathfinder areas have said they want to participate. We anticipate it being significantly more, but obviously it varies by different CCG area how far they’ve got in their conversations with different practices.’

He said that all 28 practices in Blackburn and Darwen CCG are participating with practices from Somerset and West Hampshire CCGs making up the remaineder, and added:  ‘Leeds is developing some proposals which it wants to test with its GPs first, so we haven’t yet started the recruitment process.’

He explained during the pilots, some of the costs of participating would be met by NHS England, but said: ‘GP practices have existing legal obligations, as we discussed, to do certain types of fair processing so we are not subsiding them to speak to their patients.

‘We are subsidising aspects of this so we can test it; we are contributing, or paying the cost of letters to go to each patient and the evaluation that surrounds that.’

This story was updated on 23 January to include the HSCIC’s correction of Dame Fiona’s evidence