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What we will collect from GP records under care.data

NHS England has instructed the HSCIC to collect information from GP practices for purposes other than direct care. As a first step we will be working with a number of GP practices (between 100 - 500). These Pathfinder GP practices will test, evaluate and refine all aspects of the data collection process ahead of national roll out.

Where information about a patient is recorded on a General Practice electronic patient record within the previous four months, we will collect the patient NHS number, date of birth, gender, and postcode. This information will go through an automated process that will enable us to link the information from GP records with information from hospitals, and will then be removed to a separate, secure place.

We will also collect ethnicity and any data from the previous four months about referrals, prescriptions or health information such as diagnoses. These diagnoses relate to health conditions such as diabetes, heart disease, stroke, cancers (including bowel, breast, and cervical), chronic liver disease, chronic kidney disease, asthma, damage to the retina of the eye, high blood pressure and dementia.

GPs record this information in the form of codes (for example, code C10E for diabetes). We will collect the coded information. We will not collect information that GPs record as written notes, such as details of any conversations that they have had with the patient.


What we will not collect

We will not collect codes that relate to sensitive information including HIV/AIDS, sexually transmitted infections, termination of pregnancy, IVF treatment, marital status, complaints, convictions, imprisonment, and abuse by others.


What we will collect if you object

If you object to information that identifies you from leaving the GP practice for purposes beyond your direct care

Your objection will be recorded as a code on your medical record at the GP practice. The HSCIC will collect information from the GP practice that tells us how many objection codes have been registered at that practice and the date of each objection. Currently, no other data relating to those who have made this objection will be extracted from their GP record in relation to care.data.

The HSCIC does need to receive information from GP practices that groups information about patients together so that GP practices can be paid for delivering these services to their patients. For example, we need to know the number of patients who have received a check for diabetes or have had a medication review. This activity will not be affected by the objection code as this information does not identify any individual patient.

If you object to information that identifies you from leaving the HSCIC

If you have asked your GP practice to record an objection to information that identifies you from being shared by the HSCIC, then we will collect information from the GP practice that you have recorded this objection, the date of the objection, and your NHS number. We need the NHS number so that we can prevent any other information we hold that identifies you from being shared.

If you have not objected to data that identifies you from leaving the GP practice, then we will collect information from the GP records as described above.

If you object to information that identifies you from leaving the GP practice and the HSCIC

If you have asked your GP practice to record an objection to information that identifies you from being shared by the HSCIC, then we will collect information from the GP practice that you have recorded this objection, the date of the objection, and your NHS number. We need the NHS number so that we can prevent any other information we hold that identifies you from being shared.

No other information about you and your care will be collected from the GP practice in relation to care.data.


What happens if I object but have consented to be in a research study?

Where you have objected to information that identifies you from leaving the HSCIC, but have consented to participate in a research study that receives identifiable information from the HSCIC, then as long as the researcher can demonstrate to us that you have consented, information we hold which identifies you can go to that researcher for the purpose of that study only.


What happens if I have objected but there is a research study that has gained legal approval from the Health Research Authority for identifiable data?

If you have objected to information that identifies you from leaving the HSCIC, then your objection will be upheld even if a research study gains approval from the Health Research Authority. This means that no information that identifies you will leave the HSCIC. See Rules for sharing information.

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