NHS Care.data: Our meeting with NHS England yesterday

This blog post is written by Ken Band, a 38 Degrees member and NHS campaigner in the West Midlands.

Yesterday, NHS England were pushed to announce that its Care.data database project will be paused for six months. As the news broke, NHS England’s chief data officer was sitting in a meeting with the 38 Degrees team, answering pointed questions about its risks.

The meeting was set up at very short notice, at the request of NHS England after news of 38 Degrees members’ plans to launch a simple online opt out tool kit.

Dr Geraint Lewis, of NHS England, was in the middle of explaining the benefits of Care.data when the ‘pause’ was flashed up. The temporary relief was clearly felt right around the table.

For 90 minutes, Dr Lewis had been pressed hard repeatedly on the issue of most concern to 38 Degrees members – private companies buying access to that data.

The searching questions came from representatives of 38 Degrees and Sum Of Us, the fairer economy campaign group, armed with the concerns and arguments of more than 300,000 38 Degrees members and petitioners.

On the table in front of Dr Lewis was a thick pile of papers and flow charts. They contained an incredibly complex web of systems, approvals and rules that would govern Care.data if it was implemented.

He worked hard to dismiss what he called the ‘myths’ and ‘nonsense’ that he said had clouded people’s understanding of the benefits of Care.data. But the campaigners’ side of the table remained unconvinced that the data was ‘safe in NHS England’s hands’. Particularly as over 40% of GPs have declared they wish to opt out their own patients from the scheme.

It was pointed out that Dr Lewis had had nearly an hour and a half to persuade some well-briefed people that there is nothing to worry about – and yet some very important questions about the risks to patients data remained unclear and unanswered.

At the same time, he was reminded, members of the public had so far been expected to grasp Care.data’s finer details and make informed decisions about the fate of their private medical data from a ‘junk mail’ leaflet that for many has never arrived.

Dr Lewis said that it was the responsibility of patients’ GPs to do the explaining. His aide conceded that the public information ‘could have been done better’. Then came news of the ‘pause’.

Throughout the meeting, making our presence felt the whole time, were the many thousands of 38 Degrees supporters and SumOfUs petition signers.

Together, we helped force NHS England to call a temporary halt to a potentially irreversible loss of patient confidentiality that could have been just a few days away.

It’s not the end of the story. We’ve been at the start of a ‘pause’ before, when 38 Degrees pressure helped to temporarily halt the Health and Social Care Bill. We can’t let the pressure off. They may be planning to diffuse the public’s concern over Care.data. But this pause is the window we need to really ramp up the pressure.