Important changes to your medical records (Care.data)
Please read you may need to act NOW
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 (HSCIC). All households should receive a leaflet ('Better information means better care') through their letterbox.
Currently the data upload is postponed until further notice
Purpose of this information:
We feel it is vital that you, as our patient, are made aware of these changes. This information has been produced to help you understand what currently happens to information you share with your health professional and how that information may be used outside of your direct care.
The majority of patients come to their GP practice when they have something wrong with them. Problems discussed are usually of a personal nature and patients expect that the information they are sharing will remain confidential. This confidentiality is central to the trust between healthcare professional and you as our patient. Without doctor - patient confidentiality, you may be reluctant to disclose information of a personal nature that we may need to help provide you with the best possible healthcare.
What we record at the practice:
Healthcare professionals in our practice records information about the care we provide. The type of information that is recorded includes the following:
• Demographics, e.g. address, telephone number,e-mail, date of birth, gender etc
• What you tell us when you see us in consultations, e.g. about your physical and psychological health and social circumstances
• Diagnosis, investigations, treatments, referrals, family background
• Social information, alcohol, smoking status
• Third party sources, e.g. hospital letters, A&E attendances, relatives, carers, insurance companies, solicitors
What we already share about you:
We share types of information about our patients. These include :
• Personal information about you and your illness, when needed for your direct care, e.g. referral to Hospital Consultants, District nurses, Health Visitors, Midwives, Counsellors, the Summary Care Record
• Patient identifiable information to public health, in order to arrange programmes for childhood immunisations, communicable diseases, cervical smears and retinal screening
• With explicit consent, personal information to other organisations outside the NHS, e.g. insurance companies, benefit agencies
• Limited information about you, if relevant, to protect you and others, e.g. to social services child protection investigations
• Anonymised (non-identifiable data) summary information for quality and outcome frameworks (QoF), medical research and clinical audit
It is important to understand that currently a limited amount of patient information or data is used mostly at local level to help design health services or undertake clinical audit and the majority of this information is anonymised.
How we protect your personal information:
Currently, your GP is responsible for protecting your information and to do this they comply with the Data Protection Act 1998 (DPA).As part of the DPA, all healthcare professionals have an obligation to share information on a need to know basis.
So what is changing?
Under the Health and Social Care Act 2012 the Health and Social Care Information Centre (HSCIC) on behalf of NHS England (the body responsible for commissioning health services across England) extract details from your medical record within the practice using identifiers such as your NHS number, date of birth, postcode and gender.
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.
Under the Health and Social Care Act 2013, GP practices have no choice but to allow the HSCIC to extract this information. Once the data has been extracted, the GP practice is no longer the Data controller for that information, and cannot control or protect in any way how that information is used, shared or who has access to it.
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.
You can object to information containing data that identifies you from leaving your GP practice. This type of objection will prevent the identifiable information held in your GP record from being sent to the secure data environment held nationally. It will also prevent those who have gained special legal approval from using your health information for research.
You can also object to any information containing data that identifies you from leaving the national secure database. This includes information from all places you receive NHS care, such as hospitals. If you do not object, information that identifies you will only leave the secure database in limited circumstances where there is special legal approval, for example for medical research. If you object, confidential information will not leave the secure database and be used in this way, except in very rare circumstances for example in the event of a civil emergency
If you do nothing, i.e. you do not opt out, then your medical information will be extracted and uploaded to the HSCIC. 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.
What you need to do now:
To opt-out, simply fill your details on the form link below. You can either post it or drop it into your GP practice, marked for the attention of your GP. If you wish to opt-out children or other members of your family for whom you are responsible, you can add their details on the back of the form.
This is not the Summary Care Record .More information on the summary care records is available on this website under further information or online at http://www.nhscarerecords.nhs.uk/. The two databases are very different. Opting out of one database does not mean that you have automatically opted out of the other. Further information about the care.data programme is available online:
Opting out will have no effect on your medical care.
Care Data opt out form