BMA calls for the patients’ records database scheme to be halted until better efforts have been made to communicate the plans
NHS officials are in crisis talks over the introduction of the controversial patients’ records database amid sustained criticism of the Government for not giving the public enough information about the plans.
The British Medical Association has called for the scheme – which is due to start extracting confidential data from patients’ medical files next month – to be halted until better efforts have been made to communicate the plans.
Their intervention came as senior officials held crisis talks about the handling of the controversial project.
Ministers are now under pressure to either stall the plan or insist on a major publicity campaign so people know more about how the database works, and in particular, about their right to opt out.
NHS England said it had ordered The Royal Mail to investigate after research found just one in three people recall receiving public information leaflets about the care.data programme.
The leaflets were supposed to be delivered last month to all 26 million households in the country.
The postal service insisted it had fulfilled its contract.
Experts said the fact the leaflets were delivered alongside junk mail, rather than addressed to individuals, left a high risk that millions of pamplets would have got lost amid takeaway menus and estate agents’ leaflets.
The Information Commissoner’s Office accused health service officials of failing to properly explain the public’s right to opt out from the national scheme, suggesting that extraction should be delayed until the matter was addressed.
The Telegraph disclosed that the NHS’ own risk analysis of the scheme warns that it could jeopardise patient confidentiality.
The document by NHS England says the central database could be vulnerable to hackers, used to identify patients “maliciously” and fears about misuse of data could damage public confidence in the health service.
The organisation has promised to carry out its own surveys to check levels of awareness among the public.
But NHS England was unable to say what has become of this research and whether plans will be halted if they are found to have been poorly communicated.
Amid signs of increasing chaos, a spokesman was unable to say whether the scheme will go ahead as planned.
The central database is due to begin extracting data next month, but a spokesman was unable to say whether or not that leaves the public with just 10 days to opt out.
Those behind the £50 million data-sharing plan say it will improve healthcare and assist medical advances.
Health researchers and private firms will be able to access the data for such purposes, but privacy campaigners and patients groups have raised fears that it could be misused, and used by companies trying to target their products or fall into the hands of insurers.
A YouGov poll of 1,100 adults reveals that 65 per cent of the public oppose the plans, with just 17 per cent of those polled supporting the database.
It was commissioned by consumer advocacy organisation SumOfUs, which is now drawing up plans with campaign group 38 Degrees for a mass opt-out campaign.
Dr Chaand Nagpaul, chairman of the BMA’s General Practitioner’s Committee, said: “The BMA is deeply concerned with the Government’s public information campaign for care.data. With just weeks to go until the uploading of patient data is scheduled to begin, patients remain inadequately informed about these proposals.”
He said GPs across the country were warning that many patients were completely unaware that their data will be uploaded, while others were fearful or had no idea how their data will be used.
Dr Nagpaul said the scheme should only go ahead if it had the support and consent of the public.
“The public awareness campaign has clearly not worked,” he said. “Today we call on the government to ensure public trust in the system by properly informing the public about care.data before the currently planned data extractions commence, and produce evidence this has been achieved, prior to uploads taking place.”
He said the organisation is due to have “urgent discussions” with NHS England.
The Royal College of General Practitioners, representing GPs, has already raised similar concerns.
Privacy campaigners have complained that it has not been made clear to patients that even if they opt out, some data will be extracted from their medical files.
Individuals can refuse to have any information that could identify them leaving their GP’s surgery, but details from records which do not identify them – such as the number of patients in any area with common diseases – can still be taken.
Patients also have a right to object if they do want information about their hospital care being used in the database. However, this can be over-ridden if the NHS deems that there is a public interest for using “identifiable data”.
Dawn Monaghan, strategic liaison group manager for the Information Commissioner’s Office said: “We don’t feel the opt-out has been explained as clearly as we expected and so we are looking to see that addressed.”
|We’re a member of the We Need To Talk coalition, a group of charities, professional organisations, Royal Colleges and service providers who believe in the effectiveness of psychological therapies.Today we published We still need to talk, a report which tells us that a third of people with the most severe mental illness are not offered talking therapy by the NHS. Yet evidence shows that when people do get help, it improves their health and helps make recovery possible – it can also help prevent people from developing psychosis in the first place.
One in five people with severe mental illness are waiting more than a year to get psychological therapies. We would rightly never accept this state of affairs for people with physical health problems – it should be no different for people with mental illness.
We want the NHS to offer a full range of evidence-based psychological therapies to anyone who needs it within 28 days of anyone requesting a referral.
Our brilliant colleagues at Mind are putting pressure on MPs and Government Ministers. But David Nicholson, the Chief Executive of the NHS, also has a crucial role to play in making this happen. The NHS has already agreed to introduce waiting times but we’re really worried it isn’t happening quickly enough. If we collectively act we have a much greater chance of making this change happen.
Will you ask David Nicholson to lead the way so that people with severe mental illness have access to the help they need, when they need it? By taking this action you are making it clear that our mental health is important to the NHS.
Thank you so much for your support.
Charlotte Wetton, Senior Campaigns Officer.
Citizens Advice warns that a lack of planning and clear direction from ministers about Universal Credit is causing anxiety and making the implementation of the Government’s flagship programme harder.
Gillian Guy, Chief Executive of Citizens Advice, said:
“Even as Universal Credit is being rolled-out, we still do not know what support will be put in place to help people to move onto the new system.
“The NAO is right to highlight a lack of planning by Government. Ministers have been frustratingly unclear about what support will be made available to ensure there is a strong safety net to help people make the transition to Universal Credit. Clearer direction from Government would ensure taxpayers get value for money and give people facing hard times the support they need.
“Even though only a tiny number of people have so far moved onto Universal Credit, many people across the country are already going to our bureaux because they don’t know what’s happening. Constant uncertainty adds to the anxiety people are feeling about the new system. More than 23,000 people went to our website for advice on Universal Credit between April and July this year.
“A staggering nine out of ten Citizens Advice Bureaux clients told us they will need some support with budgeting or getting online as they move onto the new system.
“Government must allow people to choose whether they get monthly or fortnightly payments for the first twelve months to help them budget, and banks must make basic accounts available to ensure claimants can actually get their money.
“Implementing Universal Credit has the potential to make or break millions of families. The new benefit must be introduced slowly and correctly, not quickly and badly.”
Via http://www.citizensadvice.org.uk via Matthew