July 24 2014 Latest news:
Monday, March 3, 2014
The controversial NHS medical records database issue has been halted for six months after many GPs in east London feared patients were unaware they would have to opt out of the programme, where personal files would be shared with hospitals and outside researchers, rather than have the choice of opting in:
Dr Ron Singer, Chair of Newham Save Our NHS, argues:
The government’s attempt to pass on your GP medical records to private companies has failed – as least temporarily.
The Care.Data scheme enabled the Health and Social Information centre to put your confidential medical information on a giant database, link it with your hospital notes, remove some ‘identifiers’ like your date of birth—but leave other details and sell it to “interested parties” outside the NHS.
No-one can object to health data being used for our benefit. But many of us will object to commercial companies and others outside the NHS using it to increase their profits.
Just like we give blood to help each other so, we would share our data—but not for profit and not without making the data completely anonymous.
We want to feel free to talk to our GP about whatever is worrying us, however personal or sensitive, our anxieties, perhaps depression or sexual problems, without worrying that this information will be passed on to others because of a new law that we were not made aware of.
The government changed the law so that this information would be ‘extracted’ by the Health and Social Information centre. Our GPs are, therefore, powerless to prevent this happening.
True, we can each opt out of the scheme. But this ‘get out’ was deliberately not well publicised. NHS England did reluctantly agree to sending an information leaflet to every household—but sent it among the pizza and holiday junk mail, so many people missed it. The public remains unaware that their medical information was about to be copied from GP notes and passed on.
The outcry among public health professionals and medical organisations on behalf of the public has been so great that NHS England, or the government, has suspended the scheme for six months.
During this pause, the public must be properly informed—the private profit motive must be removed and we must be reassured that our sensitive information remains confidential by changing the law that protects our the trust between us and our GPs.
But Dr Andy Mitchell, NHS England’s London Medical Director, explains why the data system is important:
There has been a lot of interest in NHS plans for a new programme that shares patient information to improve healthcare outcomes.
Many discussions look at some people’s concerns about the programme, but few fully explored the benefits that sharing medical information can bring.
We believe the ramme, care.data, will help significant improvements in healthcare.
Sharing information across the health service helps us keep a close check on the quality and safety of NHS services to ensure care is delivered consistently across the country.
It also gives us the ability to take prompt action in resolving any issues where standards need to be improved.
Another benefit is the joining up of information about care received across different areas of the health service.
This will help understand what happens to patients, especially those with long-term conditions, who are often cared for away from hospital.
Sharing vital information will allow us to make any changes or improvements to services that are needed.
The NHS is always looking to assist research into new medicines and improve management of disease. Care.data will also allow access to information that will help deliver these outcomes.
It is important people know that any information to be shared would not include their name or address.
However, having listened to concerns raised by patients, GPs, and other professional organisations, we now understand the public needs more time to be informed about information sharing, its benefits and their ability to object.
That is why we have extended the public awareness campaign until the autumn, to allow us more time to provide information around the safeguards that are in place to protect personal data and make sure patients know about their right to object.
We will undertake work with patient and professional groups, including Healthwatch, the British Medical Association and the Royal College of GPs over the next six months, to promote public awareness and make sure information is accessible to all, including those with disabilities.
We want to build public confidence in this programme so that people fully understand the broad range of benefits throughout health and care services that information sharing can bring.