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NHS England sets out the next steps of public awareness about care.data

NHS England and the Health and Social Care Information Centre (HSCIC) today set out the next steps to raise public awareness about care.data – a programme that will use information to improve the safety and care of patients.
 
NHS England, together with the Health and Social Care Information Centre, announced that throughout January, all 22 million households in England will receive a leaflet explaining how the new system will work and the benefits it will bring.  The leaflet drop is the next stage of NHS England’s public awareness plan and follows wide consultation with a range of stakeholders including GPs and patient groups.  The leaflet will cost about eight pence per household, or around £1 million in total, and will clearly set out how peoples’ information will be used and their right to object if they have concerns.  
 
The NHS treats about one million people every 36 hours, collecting a vast amount of information about how patients have been treated and what their outcomes have been. At the moment, this information is held separately across the NHS. 
 
For the first time, the care.data programme will link information from different NHS providers to give healthcare commissioners a more complete picture of how safe local services are, and how well they treat and care for patients across community, GP and hospital settings. 
 
The information can also 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.
 
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. 
 
“To do this, we will need to link data.  The HSCIC has been handling hospital data securely in this way for decades.  The system is designed to be extremely secure, with a suite of safeguards to protect confidentiality.  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.”
 
The HSCIC, as the designated ‘safe haven’, will extract data routinely from all GP practices as well as hospitals. The data will be brought together in using automated systems in the secure environment of the HSCIC.  After being linked together, the information is made available in a form that is stripped of information that could identify patients.
 
Kingsley Manning, Chair of the Health and Social Care Information Centre, said:
 
“The duty on the HSCIC to preserve and protect confidentiality and privacy is clear and we are determined to uphold it.  The huge benefits offered by the development of care.data are also clear but can only be delivered in the context of public understanding and trust. 
 
“Valuable feedback from doctors and members of the public has led us to decide to take this more slowly, in order to support GPs in discussing this with patients and to ensure the public in general is aware.  We cannot achieve this transformation in enhanced knowledge of the effectiveness of health treatments without public support and understanding.”
 
Everyone making healthcare decisions needs access to high quality information: clinicians need it to inform their decision making; patients need it when deciding which treatment option is best for them; and commissioners need it when making decisions about which services are right for their populations.
 
Professor Peter Johnson, Cancer Research UK’s chief clinician, said: 
 
“Using patients’ data for cancer research can saves lives.  Analysing NHS records will help us to understand the causes of cancer, including how to prevent the disease, how we can get people diagnosed and treated faster, and what happens to people who take part in our clinical trials. 
 
“Of course it is vital that everyone understands how their data might be used and we must make sure that there are rigorous safeguards in place to keep patients’ data stored securely and used appropriately. Under these plans, people will know they still have the choice to object if they do not want their medical data being shared for research purposes.”

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9 comments

  1. Amanda Barley says:

    This article says ALL households in England will receive a leaflet but that is simply not true. Households who have expressed a preference to avoid junk mail from Royal Mail’s Door-to-Door service have not received a leaflet.

  2. helena cermakova says:

    Its the 7th feb and i haven’t received any such leaflet instead the national press has alerted me to this, not even my GP has informed me. So I found and downloaded an opt out form filled it in and sent it to my GP. As a matter of principle I have taken this decision since THE NHS haS failed to inform me of changes to my medical records which belong to me.

  3. NHS England says:

    Many thanks for all your comments – here’s some further information in response to some of the issues raised:

    If you wish to object to your GP data being used for purposes beyond your direct care, you should let your GP know. Occasionally they might ask you to fill in their own form. You don’t have to fill in a national one. Unfortunately, technicalities of the Data Protection Act mean that NHS England cannot capture and record people’s objections at a national level – your GP has the legal duty to do this under the Act. We are doing all we can to support GPs in this duty however, and if you have any questions or concerns then you can call the national patient information line on 0300 456 3531

    This blog: https://www.england.nhs.uk/2014/01/15/geraint-lewis/ includes further details about the different ways information is shared and the safeguards in place to protect your privacy. For example, a robust data sharing agreement must be in place before any amber (pseudonymised) or red (identifiable) data is shared. Within this agreement, there are civil and criminal penalties which if the person receiving the data shares it with anyone other than those named on the agreement (including people within their own organisations), tries in any way to re-identify patients from amber data, or uses any data for any purpose other than that stated in the agreement.

    The Health and Social Care Information Centre has confirmed that it will publish quarterly reports detailing who has received patient data and the grounds on which it has been shared, so that you can see how your information is used.

    NHS England

  4. Jen Persson says:

    Bad money after more bad money – please stop spending my own taxpayer £ to tell me that I can’t opt out of a system I don’t want any part of – clinical care=identifiable, non-clinical planning and commissioning if it must = non-identifiable – every other SUS should have 100% opt out.

  5. hesperus says:

    It is one thing to share my data with healthcare professionals who are treating me, very different for it to be provided in ‘anonymous’ format to third parties such as companies. I was intrigued recently to have a scan on the NHS by a private firm for a complaint and immediately began receiving literature about remedies for that complaint. Odd, isn’t it?
    Will I be able to opt out from my data being provided to commercial firms? I don’t want lots of letters offering me instant solutions!

  6. Gary Howorth says:

    At last the ‘little people’ who don’t normally count have been listened to. It’s a shame the top people don’t talk to the people on the ground before they go charging in. This has caused so much bad feeling in GP land. But thanks for getting it right in the end.

  7. Dave Smith says:

    Does it also explain how my data will be kept safe, when the NHS has all these millions of paper files that are not traced and the fact that anyone uses anyones log in details for IT

  8. neukom says:

    If the HSCIC leaflet going to all households instructs patients to contact their GP to discuss the plans or opt out it will cause a potentially fatal disruption to GP services because of the demand for information it will produce. This severe disruption will last for several weeks.

  9. Peter Short says:

    In what ways will this data be different in content or format from the data CQC intends to publish about health providers? If it is, will the data be available publicly to supplement or improve on the judgements about safety and quality being made by the CQC?

    Commissioners need to be able to manage the whole budget for health care in a community if they are to make best use of resources, and to leverage systemic change by investing across the whole of a care pathway.