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What you need to know about care.data

Care.data has been surrounded in controversy. So what do GPs and practice managers need to know about the scheme and what should they tell patients? Fiona Barr reports

care.data will extract data from GP records and is different to the Summary Care Record (Image: iStock)
care.data will extract data from GP records and is different to the Summary Care Record (Image: iStock)

What is care.data?

The care.data programme has been set up by NHS England with the aim of making greater use of NHS data to improve care planning and support research by linking patient data from different organisations. The programme is to start by extracting identifiable coded data about referrals, prescriptions, diagnoses, procedures and family history from all GP practices in England before linking it to hospital data.

The General Practice Extraction Service will be used to extract the data and it will be held within the ‘safe haven' of the Health and Social Care Information Centre before the combined GP and hospital information is shared.

The initial aim is for commissioners and providers to have access to the data, usually in anonymised or pseudoanonymised form, to help develop more integrated services.  NHS England says no identifiable data will be made available to organisations unless there is a legal basis to do so.

What does it mean for practices?

Practices are required by law to take part in the scheme. The Health and Social Care Act 2012 requires practices to release the data without the need for patient consent although patients will be able to opt-out.

Practices are also legally obliged to raise awareness of care.data before extraction begins under ‘fair processing’ rules set out by the Data Protection Act. That means telling patients about the plans for care.data and giving them the right to opt-out.

If a patient objects to their data leaving the practice GPs must enter a relevant Read/CTV3 or SNOMED code to ensure that data is not included in the extract. A separate code can be used for patients wishing to opt-out of personal data from any care settings leaving the HSCIC.

The scheme was put on hold in February 2014 after objections were raised about the adequacy of the public information campaign and the initiative will now first be piloted in a pathfinder stage which is due to start soon (see below).

What has the controversy been about?

Medical organisations and privacy campaigners criticised NHS England for failing to inform patients adequately and for setting up the programme on an opt-out basis. July BMA’s annual meeting passed a motion calling for the programme not to continue in its present form. The BMA said the scheme may deter patients from confiding in their GP in the future, claimed future potential data users were  not well identified and attacked  the system for operating an opt-out rather than opt-in basis.  

How does it differ from the Summary Care Record?

The Summary Care Record (SCR) collects data for direct patient care in contrast to care.data plans to use the data for 'secondary' purposes, such as research. The SCR is an extract of summary information from GP records that can be seen by clinicians in other setting such as out-of-hours organisations or A&E to help with decision making in consultations.

If a patient has opted out of the SCR this will not automatically apply to care.data. The SCR dissent code and the care.data objection code will both need to be added to a patient´s record if they want to opt-out of both.  

Where do GP representatives stand now?

The GPC and the RCGP both sit on the care.data's advisory group, which was set up after NHS England was forced to pause the programme earlier this year. They have been advising NHS England on adapting its information campaign and also discussing issues such as the scope of the data extract and who will have access to the data.  

NHS England says its plans for piloting care.data (see below) have been developed and agreed with advice from the BMA and the RCGP’s joint GP IT Committee.

The GPC says practice participation in the pathfinder stage is voluntary and that practices outside the pilot areas should continue to enter the opt-out codes where requested by patients. It says it has made it clear to the care.data programme that it supports an opt-in policy.

The RCGP supports the care.data initiative in principle but welcomed the six-month pause in the project. It wants to see every patient receive a personalised letter about the care.data programme combined with a bigger national information campaign and guarantees that data will not be sold for profit.

What is happening now?

Up to 500 GP practices from between two and four CCGs are expected to start piloting the programme in the next few weeks. The names of the CCGs are due to be announced shortly and NHS England says it wants to get as many practices as possible from each CCG to take part.

The pathfinders will test different methods of informing patients about care.data before moving on to the data extraction stage.

NHS England says it expects to work with the sites throughout the autumn and winter. Dame Fiona Caldicott’s Independent Information Governance Oversight Panel has also agreed to work with the programme on the quality assurance of the processes used in the pathfinder stage.

What about national roll-out and future extensions to the project?

There is no timetable for full national roll-out and the chair of the care.data advisory group has said the pilots will be evaluated before decisions are taken on wider roll-out. NHS England says it does not want to work to ‘artificial deadlines’ and that roll-out will happen ‘when it is right to do so’. In the mean time it says it will continue to listen to the public and inform them of developments.

At the moment the extraction from GP practices, listed in the technical specification, excludes ‘sensitive’ data classified as data on infertility, sexually transmitted infections, terminations, gender identity matters and abuse. However, NHS England has plans to look at extending the scope of the data extract. It also plans to consider extending the type or organisations that can have access to the linked data.   

Where can I find out more?

More information is available from NHS England and the BMA.  Existing patient and GP information resources about care.data are being reviewed as part of the current pause in the programme.

Hampshire GP and Caldicott guardian Dr Neil Bhatia, who has a special interest in confidentiality, has also set up a website http://care-data.info/ dedicated to the programme.

Care.data at a glance
  • Care.data is a programme to extract personal confidential data from different care settings and link it with hospital data. The first stage involves GP practices
  • Practices are required by law to take part
  • Practices are also required by law to raise awareness of the programme with patients
  • GP record extraction will be on an opt-out basis
  • Practices need to enter relevant Read code if patients want to opt-out
  • The programme has been subject to delay due to concerns over consent and confidentiality
  • Pathfinder programme involving up to 500 practices in two to four CCGs are due to launch soon
  • No date for national roll-out as yet

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