Using information about the care you have received, enables those involved in providing care and health services to improve the quality of care and health services for all. The role of the Health and Social Care Information Centre (HSCIC) is to ensure that high quality information is used appropriately to improve patient care.
NHS England has therefore commissioned a programme of work on behalf of the NHS, public health and social care services to address gaps in information. Our aim is to ensure that the best possible evidence is available to improve the quality of care for all.
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.
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.
Sharing information about the care you have received helps us to understand the health needs of everyone and the quality of the treatment and care provided and reduce inequalities in the care provided. 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
- make sure that any changes or improvements to services reflect the needs of the local patients
- understand who is most at risk of particular diseases and conditions, so those who can plan care can provide preventative services
- improve your understanding of the outcomes of care, giving you greater confidence in health and social care services
- identify who could be at risk of a condition or would benefit from a particular treatment
- make sure that the NHS organisations receive the correct payments for the services they provide
- 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 all patients
It is important that you read the leaflet Better information means better care (PDF, 2Mb) so that you understand how information in medical records can be used to improve the way that healthcare is delivered.
If you are happy for your information to be used then you do not need to do anything. But if you have concerns or if you do not want information that identifies you from being shared outside your GP practice, as described here, inform a member of staff at your practice. They will make a note of this in your medical record. This will prevent your information being used other than where necessary by law, such as in case of a public health emergency.
You will also be able to restrict the use of information held by other places you receive care from. However, this will not affect the care you receive.
You can change your mind at any time and as many times as you wish. Just inform your GP practice and ask them to record your wishes.
There will be a phased roll out for the programme beginning in autumn 2014 when information from between 100-500 GP practices will be extracted and sent to the HSCIC. The GP data will be linked with the hospital data already held by the HSCIC.
For more information about how data is collected and shared, including confidentiality, read the Q&A below or the Patient FAQs (PDF, 213kb) produced by the HSCIC and NHS England.
Call our dedicated patient information line in relation to data sharing on 0300 456 3531. Translation and text phone services are also available.
Why do I need to read the leaflet ‘Better information means better care’?
The leaflet contains important information about your health records. It explains that NHS organisations share information about the care that you receive with those who plan health and social care services, as well as with approved researchers and organisations outside the NHS, if this may benefit patient care.
It is important you know how information about your health is used, shared and protected and what choices you have.
Why is information collected?
By using information about the care you have received, those involved in providing health and care services can see how well different services are performing and where improvements need to be made.
Sharing information about the care you have received helps us understand the health needs of everyone and the quality of the treatment and care being provided. It also helps researchers by supporting studies that identify patterns in diseases, responses to treatments, and the effectiveness of different services.
What is the 'secure environment' mentioned in the leaflet?
The secure environment is called the Health and Social Care Information Centre, which is a public body based in Leeds. The Health and Social Care Information Centre was set up in April 2013 as the central source of health and social care information in England.
The role of the Health and Social Care Information Centre is to ensure that high quality information is used appropriately to improve patient care. The organisation has legal powers to collect and analyse information from all providers of NHS care. It is committed, and legally bound to the very highest standards of privacy, security and confidentiality to ensure that your confidential information is protected at all times. Access to information is strictly controlled. Further information about the Health and Social Care Information Centre is available at www.hscic.gov.uk/patientconf
What is changing?
For decades, the NHS has been using information from health records for purposes other than providing your direct care, for example to support research and to help plan new health services. However, we need to upgrade our information systems and collect information from more places where you may receive care. Doing so will make sure that we have joined-up information about all parts of the NHS, as well as public health and social care services.
Why are these changes needed?
The NHS has some of the best information systems in the world. Since the 1980s, we have been collecting information about every hospital admission, nationwide. This information is brought together at the Health and Social Care Information Centre, where it is anonymised (see question seven, 'Will confidential information be shared?'). The information has been invaluable for monitoring the quality of hospital care, for planning NHS services, and for conducting research into new treatments.
However, the information collected is incomplete with areas such as prescribing and test results not currently included. Additionally, while we have this type of information already for some of the care provided outside hospitals, there are significant gaps. As a result, it is not currently possible for us to see a complete picture of the care that patients receive.
NHS England has therefore commissioned a programme of work on behalf of the NHS, public health and social care services to address these gaps. Known as the care.data programme, this initiative has been designed to ensure that there is more rounded information available to citizens, patients, clinicians, researchers and the people that plan health and care services. Our aim is to ensure that the best possible evidence is available to improve the quality of care for all.
When will these changes occur?
The first change is that information from between 100-500 GP practices will be brought in to the Health and Social Care Information Centre in autumn 2014. This information will be joined to the hospital information that is already held by the Health and Social Care Information Centre. In the future, we will also collect information from different parts of the health and social care system to create a joined up picture of all the care delivered.
Will confidential information be shared?
The Health and Social Care Information Centre collects information from a range of places such as your GP practice, hospitals and community services. This information includes postcodes and dates of birth so that the information about an individual can be joined together accurately. However, there are very strict rules about what information the Health and Social Care Information Centre can release to the NHS and outside organisations. Information can be released in three ways:
- Anonymised information: this information does not identify any individuals, nor small numbers of patients with rare characteristics or diseases. Anonymous information may be published in public reports produced by the HSCIC.
- Potentially identifiable information: this is information about individual patients but it does not include any identifiers (that is, there are no personal details such as your date of birth and postcode included). We would never publish this type information because there is a risk that you might be identified. For example, if you were the only person in an area who had a rare disease then someone may work out that it was you even though your identifiers were not included. As a result, there are strict controls about how we release potentially identifiable information. For example, we would only ever release this type of information to approved organisations for approved purposes, and there must be a legal contract in place with penalties for any misuse of the information.
- Identifiable information: information that identifies you can only be disclosed where you have given your explicit consent (such as where you have agreed to participate in a research study) or there is a legal basis for doing so (see question 22 in the full list of Patient FAQs).
What kinds of information sharing can I object to?
There are two types of information sharing you can object to:
- You can object to information containing data that identifies you from leaving your GP practice. This type of objection will prevent the identifiable information held in your GP record from being sent to the Health and Social Care Information Centre’s secure environment. It will also prevent researchers who have gained legal approval (see question 22 in the full list of Patient FAQs) from receiving your health information.
- Information from other places where you receive care, such as hospitals and community services is collected nationally by the Health and Social Care Information Centre. The Health and Social Care Information Centre only releases this information in identifiable form where there is legal approval for doing so such as for medical research (see question 22 in the full list of Patient FAQs).
This legal approval is only granted where it is:
- in the interests of patients or the wider public to do so; and
- impractical to obtain each individual patient’s consent; and
- not possible to use anonymised data.
If you object, this type of information will not leave the Health and Social Care Information Centre to researchers with approval. The only exceptions are very rare circumstances such as a civil emergency or a public health emergency.
Will my whole GP record be used?
No. Only the agreed amount of information required will be used. GP representatives and an independent advisory group have been involved in deciding which health, care and treatment information should be extracted. Your date of birth, postcode, NHS number, and gender (but not your name or full address) will be used to link your records in a secure environment at the Health and Social Care Information Centre but will then be removed (see question 3 in the full list of Patient FAQs).
Once this information has been linked, a new record will be created with a reference number that does not identify you. This new record will not contain any information that identifies you.
I can’t get in to my GP Practice to object, what should I do?
Please contact your GP Practice by telephone or email to discuss with them what arrangement would work best. If you have a query or a question about the leaflet you received through your letterbox, you can call our Patient Information line on 0300 456 3531.