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Confidentiality and Sharing Data

The care.data programme: collecting information for the health of the nation

What is care.data?

Care.data is a programme of work led by NHS England and the Health and Social Care Information Centre (HSCIC) which will bring together securely, health and social care information from different settings in order to see what’s working really well in the NHS – and what we could be doing better. Using data in this way is known as data sharing for purposes beyond direct care, and the information will only be shared if it will benefit patient care.

Collecting and connecting information nationally helps us:

  • better understand diseases and develop drugs and treatments that can change lives;
  • understand patterns and trends in public health and disease to ensure better quality care is available to everyone;
  • plan services that make the best of limited NHS budgets for the health and wellbeing of everyone;
  • monitor the safety of drugs and treatments; and
  • compare the quality of care provided in different areas of the country.

What is meant by health record?

Wherever you visit an NHS service a record is created for you. This means medical information about you can be held in various places, including your GP practice, any hospital where you’ve had treatment, your dentist practice, and so on.

Since April 2015 all GPs offer their patients online access to summary information of their GP records. A health record (sometime referred to as medical record) should contain all the clinical information about the care you received. This is important so every health professional involved at different stages of your care has access to your medical history such as allergies, operations or tests. Based on this information, the health professional can make judgments about your care going forward. Find out more about different types of records.

Your health records should include everything to do with your care including x-rays or discharge notes. The data in your records can include:

  • treatments received or ongoing
  • information about allergies
  • your medicines
  • any reactions to medications in the past
  • any known long-term conditions, such as diabetes or asthma
  • medical test results such as blood tests, allergy tests and other screenings
  • any lifestyle information that may be clinically relevant, such smoking, alcohol or weight
  • personal data, such as your age, name and address
  • consultation notes, which your doctor takes during an appointment
  • hospital admission records, including the reason you were admitted to hospital
  • hospital discharge records, which will include the results of treatment and whether any follow-up appointments or care are required
  • X-rays
  • photographs and image slides, such as those produced by a magnetic resonance imaging (MRI) or computerised tomography (CT) scanner

What is a Summary Care Record?

All the settings where you receive healthcare keep their own medical records about you. These places can often only share information from your records by letter, fax or phone. At times this delays information sharing which can affect decision making and slow down treatment. To help improve the sharing of important information about you, the NHS in England is using an electronic record called the Summary Care Record.

Your Summary Care Record contains important information from the record held by your GP practice and includes details of any medicines you are taking, any allergies you suffer from and any bad reactions to medicines that you have previously experienced. Your Summary Care Record also includes your name, address, date of birth and your unique NHS Number to help identify you correctly.

You may want your GP to add other details about your care to your Summary Care Record. This will only happen if both you and your GP agree to do this. You should discuss your wishes with your GP practice.

Allowing authorised healthcare staff to have access to this information helps to improve decision making by doctors and other healthcare staff and has prevented mistakes being made when patients are being cared for in an emergency or when their GP practice is closed.

Access to your Summary Care Record is strictly controlled. The only people who can see the information is the healthcare team currently in charge of your care. They can only access your records via a special smartcard and access number (like a chip-and-pin card). Healthcare staff will ask your permission every time they need to look at your Summary Care Record. If they cannot ask you, e.g. because you're unconscious, healthcare staff may look at your record without asking you. If they have to do this the decision will be recorded and checked to ensure that the access was appropriate.

You can choose to opt out of having a Summary Care Record at any time. In that case, you need to let your GP practice know by filling in an opt out form. If you are unsure if you have already opted out please ask the reception staff who can advise you.. If you change your mind again simply ask your GP to create a new Summary Care Record for you.

What is meant by an Integrated Digital Record?

On a local level some Clinical Commissioning Groups (CCGs) have started to integrate patients’ health and social care records to improve the overall care they provide in their area and to ensure more joined up care is given to patients. This is called Integrated Digital records.

Other CCGs may offer similar schemes or entirely different ones.

Visit your CCG's website or contact the CCG directly for more information.


 

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