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This information has been prepared by members ofBethnal Green Health Centre Patients Group.


Theinformation below is important for all of us. It explains NHS England’s plan to collect and use our personal healthrecords to help develop better health services. We all have a choice to make.


What is care.data?

care.data is a new system which will collectand analyse our personal medical records. It will take the information held by ourGPs and link it to our hospital records, together with any records from healthand social care services.

This hugedata bank is run by the Health and Social Care Information Centre (HSCIC),which was set up last year by NHS England.  The aim is to give health planners and medical researchers moreinformation so they can:

·        spotnew health problems in different areas or age groups, and advise on earlyaction to stop them becoming widespread

·        pickup early warning signs when treatments have serious side effects

·        comparethe results and costs of NHS and privately run services, and

·        checkwhat happens when services  such asA&E change or close down.

·        Seewhere there are gaps in services and make sure everyone gets a fair share        of good healthcare

·        Useall this knowledge to design better and more cost effective services to improvethe health of the nation.

Most people agreethese are big benefits. But as individuals we now have to decide if we arewilling to let our personal health information go outside the surgery – wherewe know and trust the staff.  Once ourrecords are copied to care.data, wewill have no control over who sees them or how our information is used. 

Do I have choices?

The NHS hassent a leaflet (“Better information means better care” ) to every household inEngland. Ask at reception if you haven’t received one.

The leafletexplains that our complete health records will automatically be sent to the HSCIC care.data centre – unlesswe decide to ‘opt out’.

Opting outmeans telling your GP that you don’t want your details to leave the surgery. This is your legal right and will notaffect your healthcare in any way.

How do I decide?

We recommend finding out as much asyou can before deciding what to do.

To find moreinformation in favour of care.datayou can:

·        phoneHSCIC’s helpline on 0300 456 3531 or go to www.hscic.gov.uk/patientconf  or  www.nhs.uk/caredata

·        checkthe many other websites and articles on the internet which explain the value ofcare.data and how it plans to work.

To find out whysome people are worried about care.data, see:

·        http://medconfidential.org/

Some of theseconcerns are explained below:

·        loss of personal privacy.    You will have no control over who sees your information orhow it is used.As well as usingrecords for the NHS, HSCICsays itwill allow access to our records to approved external organisations. Thesecould include pharmaceutical and health insurance companies and health andsocial care businesses. It is not clear who will actually own the data once it goesoutside the NHS.

·        Protection of anonymity is built intothe system but not guaranteed. When your health record is sent to care.data by your GP, your name, date of birth and postcode will bereplaced by a unique codename so it can be linked to your hospital and othertreatment reports. Patient information will be anonymised except in some“limited circumstances”,  according toNHS England.  HSCIC  explains a complicated system that provides degreesof anonymity.  HSCIC website includes apricelist for external organisations who want access to any of the data andthis includes a category of personal confidential information, subject to legalsafeguards.  So just how confidentialwill the system be? How easy would it be for someone to ‘hack in’ to theinformation?  Where could our records endup?

·        ATOS will run the care.data systems. ATOS is the company that carried outdisability assessments for the Department of Work and Pensions.

It was criticised heavily by some people for being unfair anduncaring. Some people are worried that care.datainformation could be linked to disability claim data. 

·        The Government has a poor record onIT projects. Inrecent years, many of the Government’s major IT projects have failed and somehave ‘lost’ thousands of personal files – for example, when staff have mislaidmemory sticks on public transport. Will care.databe different? Is it ever possible to have a watertight system? Ordo we think that losing some data is worth the risk in this case?

For adetailed article looking at both sides, go to:

·        www.opendemocracy.net/ournhs/allyson-pollock-alison-macfarlane/opting-out-of-caredata-is-not-answer

What do I do next?

If you arehappy for your records to go to care.data:

·        youdon’t need to take any further action

·        yourrecords will be collected automatically – probably by late March 2014 (butthere is no firm date)

·        you won’t be able to re-call yourrecords in future orstop HSCIC using them however they decide, but

·        youcould decide to stop future recordsgoing to care.data if you change your mind later.  In this case you need to tell your GPimmediately.

If you don’twant your records to go to care.data:

·        youshould ask reception for a copy of the surgery’s standard ‘opt-out’ letter –you should sign this letter and drop it in the box on the desk

·        youcan change your mind later, by sending a new note to your GP – then all yourrecords will be sent on to care.data.

These notes and acopy of the opt-out letter are available on the surgery website: www.bethnalgreenhealthcentre.nhs.uk

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