Under the powers the Health and Social Care Act 2012 the Government has introduced the care.data programme that allows the Health and Social Care Information Centre (HSCIC) to extract details from GP medical records for purposes other than direct medical care.
GP practices across England will soon be required to supply patients’ personal and confidential medical information, on a regular and continuous basis, to the Health and Social Care Information Centre.
NHS England has decided to postpone the data upload till Autumn 2014 to allow more time to learn about the benefits of sharing your medical information and your right to object to your information being shared with third parties. All households should have received a leaflet (‘Better information means better care’) through their letterbox about this in January 2014.
Details from your medical record will be extracted from the practice in a form that can identify you, and will include your NHS number, date of birth, postcode, gender and ethnicity, together with your medical diagnoses (including cancer and mental health), their complications, referrals to specialists, your prescriptions, your family history, details of your vaccinations and screening tests, your blood test results, your body mass index, and your smoking/alcohol habits.
This programme is called care.data, and the information uploaded will be used for purposes other than your direct medical care (so-called “secondary uses”).
Medical staff treating you in GP surgeries, hospitals, A&E and out-of-hours centres will not use, or be able to use, this database. However, the uploaded data is likely to be made available to organisations outside of the NHS, such as universities and commercial organisations.
Care.data will make increased use of information from GP medical records with the intention of improving healthcare, for example by ensuring that timely and accurate data are made available to NHS commissioners and providers so that they can better design integrated services for patients. In the future, approved researchers may also benefit. The HSCIC will link Personal Confidential Data (PCD) extracted from GP systems with PCD from other health and social care settings.
You have a choice.
If you are happy for your information to be used in this way you do not have to do anything.
Although GP practices cannot object to this information leaving the practice, individual patients and their families can instruct their practice to prohibit the transfer of their data, i.e. you have the right to opt-out. If you have any concerns or wish to prevent the transfer of your personal medical details, please speak to our practice staff.
If you do not want information that identifies you to be shared outside your GP practice, please ask one of our Reception Staff to make a note of this in your medical record. This note will prevent your confidential information from being used other than in special circumstances. Information from other places where you receive care, such as hospitals and community services, is collected nationally. You should also let your GP practice know if you want to prevent the information from those places being shared. We will make a separate note of this in your medical record.
Once uploaded, you will not be able to get this data deleted by the HSCIC. So if you want to opt out, you need to act now. To opt out, simply inform one of our Receptionists or fill in your details on the care.data opt-out form, available from this website or from our Reception. You can post it or drop it in to our Reception. If you wish to opt out your children or other members of your family for whom you are responsible, you can add their details on the form as well.
You can obtain further information about the care.data service by watching the “Better information means better care” video, by downloading the various documents and by visiting the relevant websites displayed below.
Downloadable documents (PDF):
You can also call for more information the dedicated call.data patient information line on: 0300 456 3531