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CARE.DATA PROGRAMME

IMPORTANT CHANGES TO HOW WE HANDLE YOUR PERSONAL DATA

19 February 2014 : NHS England today announced it was postponing the extraction of data from the medical records of general practice patients until the autumn.

The decision follows talks between the BMA and NHS England over GPs’ concerns that their patients were unaware of the implications of the care.data scheme, which was due to be implemented in April.

We have had no say in this decision but we, along with all other GP surgeries, will be legally required to supply your  medical information to the Health and Social Care Information Centre (HSCIC) .  Although your name will not be used, this information will be taken electronically from the practice computer system with data that can identify you (e.g. date of birth, NHS Number, postcode).    The government has chosen to implement its new data collection scheme on an opt-out basis. 

This means that individual patients can instruct their Practice to stop the transfer of their data but it will be assumed by the HSCIC that anyone who does not specifically object has given their consent to the scheme. 
We are concerned that patients will not be aware of this change and can therefore not be said to have given their informed consent.

Common complaints in the media are that Doctors have not written to their patients - we were told that every household would be informed - however,
we were not aware that it is a leaflet delivered along with the rest of the junk mail.    (click on link below for the leaflet)                                   

The programme will now start in the autumn.

IT IS IMPORTANT IF YOU DO NOT WANT YOUR INFORMATION TO BE SHARED IN THIS WAY YOU MUST CONTACT US TO OPT OUT.

Click on the link below or forms are available from the surgery, alternatively, write to us with your objection for every member of your family (including children)

Opt out form:     Care.data opt out form


Link to official leaflet:  nhs-england-care-data-patient-leaflet.pdf (.pdf, 343.3 KB)


Patient Information line:

The patient information line is also there to answer any questions or concerns that people have about how their data are used for these purposes. The information line is open Monday to Friday, 8am to 8pm and on Saturdays from 9am to 3pm. The number to call is 0300 456 3531. A text phone service is also available on 0208 7428620.

More official information can be found under Care Data NHS England on the right, or below taken from the NHS Choices website:

What is the care.data programme?

Care.data is a modern information system that is being developed, which will make increased use of information from medical records with the intention of improving health services.

It is important that the NHS can use this information to get a complete picture of what is happening across health and social care and to plan services according to what works best.

The new system will provide joined-up information about the care received from all of the different parts of the health service, including hospitals and GP practices.

What sort of data is being collected?

Your date of birth, full postcode, NHS Number and gender rather than your name will be used to link your records in a secure system, managed by the HSCIC. Once this information has been linked a new record will be created. This new record will not contain information that identifies you. The type of information shared, and how it is shared, is controlled by law and strict confidentiality rules.

What will the data be used for?

The new system will also provide information that will enable the public to hold the NHS to account and ensure that any unacceptable standards of care are identified as quickly as possible. Information will help to:

  • find more effective ways of preventing, treating and managing illnesses
  • guide local decisions about changes that are needed to respond to the needs of local patients
  • support public health by anticipating risks of particular diseases and conditions, and help us to take action to prevent problems
  • improve the public’s understanding of the outcomes of care, giving them confidence in health and care services
  • guide decisions about how to manage NHS resources so that they can best support the treatment and management of illness for the benefit of patients

If you are happy for your information to be used then you do not need to do anything. But if you have concerns you should talk to your GP.

Conclusion

The information gathered by the programme can be used by NHS organisations to plan and design services better, using the best available evidence of which treatments and services have the greatest impact on improving patients’ health.

So ultimately, sharing your information will benefit you.

Tim Kelsey, NHS England’s Director of Patients and Information, said: “I believe the NHS will make major advances in quality and patient safety through the use of this data. At the moment, the NHS often doesn’t have the complete picture as information lies in different parts of the health services and isn’t joined up. This programme will give NHS commissioners a more complete picture of the safety and quality of services in their local area, which will lead to improvements to patient outcomes… But we know not everyone will feel comfortable and we want to make sure they know they have the right to say ‘no’. Patient confidentiality is non-negotiable.”



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