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Sharing your Information

How sharing information in your medical records can help the NHS to provide better care

A modern information system has been developed, which will make increased use of information from medical records with the intention of improving health services. The system is being delivered by theHealth and Social Care Information Centre (HSCIC) and NHS Englandon behalf of the NHS.

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.

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
  • guide local decisions about changes that are needed to respond to the needs of local patients
  • support public health by anticipating risks of particular diseases and conditions, and help us to take action to prevent problems
  • 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 the benefit of patients

It is important that you read the leaflet How information about you helps us to provide better care (PDF, 344kb) 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 you should talk to your GP.

If you do not want information that identifies you from being shared outside your GP practice, talk to 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 speak to your GP practice and ask them to record your wishes. For example, if you state that you are happy for your information to be used then you later decide that you object, tell your GP and the HSCIC will then ensure that any information they have from your GP practice and that could identify you is removed.

Information from GP practices will begin to be extracted and sent to the HSCIC in the autumn 2013. 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 download the FAQ for patients (PDF, 153kb) produced by the HSCIC and NHS England.

Will my entire GP record be used? hide

Only the minimum amount of information required will be used. Your date of birth, full postcode, NHS number and gender rather than your name will be used to link your records in a secure environment, managed by HSCIC, before being deleted. Once this information has been linked a new record will be created. This new record will not contain information that identifies you.

When your GP enters information into a health record a combination of free text and codes is used.

  • Free text might include information you tell your doctor during a consultation, such as your symptoms, occupation or how you are feeling. Free text information will not be sent to the HSCIC secure environment.
  • Codes are a combination of letters and numbers that indicate a piece of clinical information such as a diagnosis, a test result, prescriptions and referrals. For example, your GP might use these codes to look up all patients with the same diagnosis and invite them to a specialist clinic. View a list of the codes that will be used (PDF, 205kb)

What is HSCIC's role? hide

The Health and Social Care Information Centre (HSCIC) will provide a secure environment for the information and will be the data controller. HSCIC is a public body and is the central source of health and social care information in England. The role of the HSCIC is to ensure that high quality data is used appropriately to improve patient care. The HSCIC has legal powers to collect and analyse data from all providers of NHS care.

The HSCIC is committed, and legally bound, to the very highest standards of privacy and confidentiality to ensure that your confidential information is protected at all times. Access to information is strictly controlled. For more information visit HSCIC’s website

Can anyone at HSCIC see my personal information? hide

When information leaves your GP practice, it will be sent to the HSCIC. The computer system at the HSCIC will link information from your GP record with other information held about you in the NHS such as hospital records, to create a new linked record. The process to create the linked record will be an automated process that also replaces any information that directly identifies you, such as your NHS number, address or date of birth with a code that does not reveal who you are.

In a small number of cases, it is necessary for HSCIC staff to check the data. However, this is only done following strict rules and processes that protect the confidentiality of the individual. Only the linked data record, which does not identify an individual, will be used by those planning health services.

Separately, there are limited circumstances when the law allows the HSCIC to pass on information that may identify you where there is special approval. But you can object to this sharing of your information.

Finally, the HSCIC also has special legal approval to link information for the Clinical Practice Research Datalink (CPRD).

What happens if my confidentiality is breached? hide

The HSCIC is committed, and legally bound, to the very highest standards of privacy and confidentiality to ensure that confidential information is protected at all times. Information in health records can only be shared beyond those caring for you where: (i) the law allows it (ii) there is a court order (iii) there is a public interest, or (iv) you have given permission

The Information Commissioner’s Office (ICO) has powers to impose heavy fines in the event of any breach of the Data Protection Act 1998 (the law which governs how your information is used by organisations, businesses and the government). It also sets out clear guidance in relation to whether data identifies you or not. Find out more on the ICO’s website.

When will my personal information be used for research? hide

In most cases researchers carry out their studies using information that does not identify you and, only occasionally, medical researchers need to use information beyond that. Only researchers who have been granted special approval by an independent panel called theConfidentiality Advisory Group (CAG) are allowed access to your identifiable information. This group grants approval to a small number of research projects, which it considers to be in the public interest and for the benefit of the health service. Approval is only given in instances where anonymous information alone isn’t enough and where contacting individuals is not feasible due to the large number of patients used in the research. Another reason could be that access is also restricted to the specific information necessary for the research.

Examples of projects approved by CAG include a national study into people who have had a heart attack and a study on waiting times for cancer treatments and the effect of these waiting times on survival. More examples can be found on the NHS Health Research Authority’s website.

Do I have a say in what research projects my data is used? hide

No. Currently you have the right to say yes or no to your information being used for research, but the system does not let you have a say on the different types of research projects that come to HSCIC. However, if a researcher is working directly with your GP practice for their study then, unless there is special approval, your GP will check with you first if you are happy to share your information and be part of the study.

Could my data be sold or used by marketing, drug or insurance companies? hide

HSCIC does not charge researchers for data. Sometimes, the HSCIC may charge an administrative fee (for example, to link the data) but there is no commercial sale of NHS data.

Also, marketing and drug companies will not have access to information that identifies you unless you give your permission. For example, your GP practice could contact you and ask if you would be happy to take part in a clinical trial.

There are some limited circumstances when the NHS needs to carry out medical research using information that identifies you. However, special approval is required and again you would not be contacted by a third party unless you agreed to it in advance.

Finally, the HSCIC will not share information about you with insurance companies or solicitors. If an insurance company or solicitor wanted information about you they would approach your GP practice directly and you would need to give your explicit consent before any of your information could be shared with them. If you do not agree to their specific request for your information then it will not be shared with them.

What kinds of information sharing can I object to? hide

There are two types of information sharing you can object to.

  1. You can object to information containing data that identifies you from leaving the GP practice. This type of objection will prevent the information held in your GP record from being sent to the HSCIC secure environment and also by those who have gained special approval to use health information for research.

     

  2. You can also object to any information containing data that identifies you from leaving the HSCIC secure environment. This includes information from all places you receive care such as hospitals. If you do not object, information that identifies you will only leave the HSCIC in limited circumstances and only with special legal approval. If you object, confidential information will only leave the HSCIC in very rare circumstances, such as in the event of a civil emergency.

If I object will this stop all data leaving the practice? hide

No. The law requires doctors to provide some very limited information about certain things. The law says, for example, that doctors must provide information to local authorities about some infectious diseases, such as if you had food poisoning. Very rarely, doctors may also be required to disclose information in order to detect a serious crime. A court order can also require doctors to disclose certain information, for example during a court case.

I have opted out of the Summary Care Record do I still need to opt out of this system? hide

Yes, you should still talk to your GP. There are important differences between allowing the NHS to use your information for planning and research and the Summary Care Record (SCR). The SCR is used by health professionals to provide you with care. It would be wrong for us to assume that because you have chosen not to have a SCR that this means you also wish to stop the use of your information being used to improve health services.

Can I stop data being used from other places where I receive care? hide

Right now you can only object to data containing information that identifies you from leaving your GP practice. The current systems used in the NHS don’t allow any other service provider to see the note of your objection in your GP record. This means that some of the information held by hospitals and other NHS services about you will flow into the HSCIC system, where it is allowed by law. However, you can object to any information containing data that identifies you from leaving the HSCIC secure environment.

In the future, it should be possible for you to stop information containing details that identifiy you from going to the HSCIC from wherever you receive care in the NHS.



 
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