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Care.Data – The Implications for General Practice

Wednesday 2nd Oct 2013 - Kate Hodkinson

The Health and Social Care Information Centre (HSCIS) is the new central body providing information to commissioners and providers of care.  The care.data service is a new development which aims to achieve six main objectives:

  1. Support patients choice
  2. Advance customer services
  3. Promote greater transparency
  4. Improve outcomes
  5. Increase accountability
  6. Drive economic growth by making England the main source of world class health services

Practices are now beginning to see how the plans to link up data across the health service will impact upon them and their patients. The intention is to expand on the existing HES (Hospital Episode Statistics) Data to create Care Episode Statistics by linking together data from several healthcare settings – most NHS consultations happen in primary care so it is vital that this information forms a key part of the developments. This will be done by the General Practice Extraction Service (GPES) which will regularly and remotely extract data from individual practice systems in England. The HSCIS is bound by both duty and the law regarding the storage and use of this information and has consulted widely on the data to be extracted and its future uses.

What information will they extract?

There are 4 main blocks of data that will be required:

  • Demographic information
  • Clinical data
  • Referrals
  •  NHS prescriptions

It is important to remember that although some patient identifiers will be used the actual name  and address of individual patients will not be extracted – the information used will be coded data only – no free text and will only be prospective data from 1st April 2013 – no retrospective data. Identification information will be essential in linking information together across a number of sources which is the key purpose of the development

Who will it be provided to?

The main purposes of this use of data are highlighted above and in order to achieve these the information will be aggregated and anonymised and used by service commissioners and providers. There are some key important terms to understand regarding the use of information:

  • Aggregated – data about several individuals that is combined to show trends etc without indentifying individuals
  • Anonymised – data in a form that does not identify individuals and identity could not reasonably be inferred
  • Pseudonymised – the process of using a unique identifier that  does not reveal any identifying information

Some aggregated CES information will be openly available in the form of reports – organisations that want specific information will have to make an application and will be provided with pseudonymised information. CCGs and NHS England will be some of the main users of this information. Every application for information will be carefully scrutinised and will be subject to a legally binding agreement.

Issues of Consent and Data Protection

The Health and Social Care Act creates a statutory obligation for GP practices to disclose information to the HSCIS which effectively makes the requirement to comply a legal obligation for practices. However as individual GP practices will have their own Data Protection registration they will retain a certain amount of responsibility for ensuring compliance with fair processing and making sure that patients understand what happens with their information. Once the data is transferred, the HSCIS will become the data controller and will, therefore, be responsible for uses of the data from that point. Under the NHs Constitution patients have the right to object to the disclosure of their personal data and so responsibility lies with the practice to ensure that patients understand how their data will be used and provide them with the opportunity to have their data excluded from this exercise? Patients can make two objections:

  1.  The patient does not want their personal data to go from the GP practice to the HSCIS
  2. The patient is happy for their data to go to HSCIS but does not want it disclosed to other organisation

In both cases the objection must be Read Coded in the patient’s records at the practice Information on communicating with patients has been developed and is available at the NHS England Website.

Communicating with Patients

Data extraction will begin in the autumn, which does not give practices much time for communicating the situation to patients. Because the disclose is a statutory one, the practice does not need to ask patients to sign a form to object to the disclosure although some practices may chose to do this – practices will need to consider their patient population and how best to communicate with them. Groups such as competent young people, those who lack competence due to a learning disability or mental health condition and those who have little understanding of written English may all need to be communicated with in special ways. What will be vital is that all staff members are aware of the development and can provide patients with appropriate information. NHs England has produced a checklist for practices which includes the following actions:

 1. Has everyone in the practice read the guide and FAQ provided by NHS England?  
 2. Have you downloaded the GP Practice Toolkit?  
 3. Has the information and promotion pack been received?  
 4. Have the posters been displayed at appropriate places in the practice?  
 5. Have you considered how you will communicate this change with patients?  
 6. Have you provided training and awareness for all the practice team?  
 7. Have any local awareness sessions been planned by the CCG?  
 8. Have you considered how to communicate with hard to reach groups?  
 9.  Have you planned how you will record patient objections in their notes?  

Thornfields@FPM has updated all of their Confidentiality and Information Governance training to reflect this change.


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