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Dear patients, we are eager to inform all of you about the care.data project. It is vital you are aware of what is happening as your personal data is involved and if you want to opt out, you only have a very short time to do so.
The people who plan and manage the NHS need access to a full picture of the care being provided to patients, so they can make sure the NHS is providing the best possible services to all of its patients. To do this, they need patient data, so they can compare care in one area with another and find out which worked the best. This data may also help researchers by supporting studies that identify patterns in diseases, responses to different treatments and potential solutions.
NHS England is getting this data through the Health and Social Care Information Centre (HSCIC). It's a new data service, known as the "care.data" programme. Under the Health and Social Care Act 2012, NHS England has directed the HSCIC to collect information from all providers of NHS care, including Cranleigh Medical Practice. Data collection will start this autumn.
What sort of data will GP practices be required to provide for care.data?
Patients' diagnoses, NHS prescriptions, biological values (e.g. blood pressure, cholesterol level, height and weight, blood test results), referrals, family history, vaccinations.
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 which does not contain information that identifies you. The type of information shared, who it is shared with and how it is shared will be controlled by law and under confidentiality rules.
What about confidentiality?
GP practices must comply with this data upload, because it is a statutory requirement under the Health and Social Care Act 2012. The General Medical Council (GMC) have made it clear that doctors must disclose this information because it is a statutory requirement. GPs will not be in breach of GMC guidance for disclosing this data, but they will be in breach of the statutory requirement if they don't disclose it.
What do I need to do now?
If you are happy with the care.data project you do not need to do anything. Your data will be uploaded within the next few weeks - at time of writing we do not have an exact date.
How do I opt out?
You do have the right to prevent confidential information about you from being shared or used for any purpose other than providing your care (except in special circumstances such as a public health emergency). If you would like to opt out, you need to let us know. You can do this by:
- Telling the receptionist or your clinician the next time you come in to the surgery
- Drop us a one-line letter saying you want to opt out of the care.data programme - please put this in the letterbox to the right of the main door
- There are leaflets about the care.data programme at reception.
- Our Patient Participation Group will be in the surgery during our flu clinics - please do speak to them.
Why haven't I heard about this before?
At the time of writing there is not going to be a national media campaign for care.data. We are reaching our patients through this website, by putting articles in local magazines, sending SMS messages, adding notes to repeat prescription order forms and spreading the word through our patient participation group. Please do encourage your friends and family to read up on what is happening.