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.
“There are three things that are necessary for me in the next six months to get right because this is such an important programme,” Kelsey said.
“One is that people are concerned about the proper assurance of the purpose for which their data is being used.
“We are going to spend time talking with the government and with as many stakeholders as we can about how we can ensure that appropriate assurance is in place to guarantee the purpose of the Health and Social Care Act, which is that this data cannot be used for any purpose other than the benefit of health and social care.”
The second point, Kelsey said, would be to help GPs understand the programme and the opt-out process. He said his own GP had provided an opt-out form on the practice website, and apparently suggested that other GPs should do the same.
“The third thing is to some extent that we want to explain why we want it so much. I’m not sure we have made the case for the benefits why this matter so much,” said Kelsey.
He claimed that on a recent visit to a hospital he had been “besieged” by staff asking why care.data wasn’t happening faster because “it’s all about saving lives.”
Despite detailed questions from MPs, Kelsey did not acknowledge that there might be more fundamental problems with care.data.
Earlier in the session, Nick Pickles from Big Brother Watch suggested that it was trying to do too many things, and that some of the demands being made for its data could be met in other ways.
While other witnesses raised the issue of pseudonymisation at source, so that confidential data did not have to be transferred to the HSCIC.
In response to this, Max Jones, the HSCIC’s director of information and data services, said he was “not yet convinced” this would work, even though GP suppliers say they can do it.
He also said there would be real issues in linking datasets if the NHS Number was not properly or consistently recorded.
Overall, the witnesses from privacy and medical research bodies called by the committee, said care.data had great promise, but it needed to be “rewired” and better communicated.
Dr Chaand Nagpaul, chair of the British Medical Association’s GP committee, said GPs need assurance about the safety of their patients’ data and called for NHS England to inform the public: “not just by a leaflet drop.”
“Patients trust us with very sensitive information. At the heart of our concern is that if patients mistrust how the data will be used, that will damage their trust in their GPs,” he said.
NHS England will be consulting with stakeholders over the next few weeks to develop an improved information programme, and will announce the plans in more detail shortly.