**The Government have now postponed the Data Upload from the 1st of March to the beginning of Autumn 2014**
From the 1st of March 2014 (now the beginning of Autumn 2014)
we will, by law, be uploading personal data from your Medical
Record to the Government's HSCIC Care.Data, Data Centre.
This includes information such as:
Your Medical History, All Referral Information, NHS Number, Post
Code, Date of Birth and More.
Please read the information below to learn about your rights in this
Important Information About Your Medical Record
Who are HSCIC and what do they do?
The Health & Social Care Information Centre was set up as an executive public body in April 2013. Under the Social Care Act 2012 they have a responsibility for:
Collecting, analysing and presenting national health and social care data
Setting up and managing national IT systems for transferring collecting and analysing information.
Publishing a Code of Practice to set out how the personal, confidential information of patients should be handled and managed by health care staff and organisations
Building up a Library of indicators that can be used to measure the quality of health and care services provided to the public
Acting to reduce how much paperwork doctors, nurses and care workers have to complete by ensuring that only essential data is collected and that we avoid collecting the same data twice.
Helping healthcare and care organisations improve the quality of the data they collect
Creating a register of all the information collected and produced so that it will be useful to as many people as possible while safeguarding the personal confidential data of individuals.
What type of data will they be collecting about me?
The data that is collected by the HSCIC includes information such as:
Date of Birth
Why haven’t I heard about this before?
The Government have assumed a stance whereby all patients are automatically opted in unless the patient has specifically requested to opt out of this data sharing system. More information can be found here: http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx
Who can access this data?
The HSCIC have stated that the following bodies will be able to access your data:
Third Party Providers contracted to run services on behalf of the NHS, such as Physio
Therapy and some Sexual Health Clinics.
What are the benefits of sharing this information?
Sharing information can help improve understanding locally and nationally for current health needs. It may help researchers by supporting studies that identify patterns in diseases, information will also help to:
Find more effective ways of preventing, treating and managing illness.
Guide local decisions about changes that are needed to respond to the needs of local patients.
Support public health by anticipating risks of particular diseases and conditions to help the NHS to take preventative action.
Improve the public's understanding of the outcomes of care, giving them confidence in health care services.
Guide decisions about how to manage NHS resources fairly so that they can best support the treatment and management of illness for the benefit of patients.
I am not happy with sharing this information, do I have a choice to opt out?
Yes! You 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 .
There are two types of information sharing you can object to.
1. 1) You can object to information containing data that identifies you from leaving the GP practice. This type of objection will prevent the information held in your GP record from being sent to the HSCIC secure environment and also by those who have gained special approval to use health information for research.
2. 2) You can also object to any information containing data that identifies you from leaving the HSCIC secure environment. This includes information from all places you receive care such as hospitals. If you do not object, information that identifies you will only leave the HSCIC in limited circumstances and only with special legal approval. If you object, confidential information will only leave the HSCIC in very rare circumstances, such as in the event of a civil emergency.
If you wish to opt out of this Data sharing program then you can do one of the following:
Speak to your GP or the Reception Team directly at the surgery.
You can email your request to: NEHCCG.Jennerhousesurgery@nhs.net
You can fill out the online form below. Please remember to include your name, date of birth and your address so that we can find you on the clinical system.
When Completing the Opt out form please tell us which number you wish to opt out of. If you wish to Opt out completely then ensure you say that you wish to Opt Out of options 1&2. Once we receive your opt out request we will apply the necessary codes to your medical record and inform you in writing when this has been done.
I am happy to share my data. Do I need to do anything?
No! If you are happy then you do not need to do anything. There is no form to fill in and nothing to sign and you can change your mind at any time.
FAQ’s and Further information
The following FAQ’s are taken from the NHS England Website which can be found by following this link: http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx
Will my entire GP record be used?
Only the minimum amount of information required will be used. Your date of birth, full postcode, NHS number and gender rather than your name will be used to link your records in a secure environment, managed by HSCIC, before being deleted. Once this information has been linked a new record will be created. This new record will not contain information that identifies you. When your GP enters information into a health record a combination of free text and codes is used.
- Free text might include information you tell your doctor during a consultation, such as your symptoms, occupation or how you are feeling. Free text information will not be sent to the HSCIC secure environment.
- Codes are a combination of letters and numbers that indicate a piece of clinical information such as a diagnosis, a test result, prescriptions and referrals. For example, your GP might use these codes to look up all patients with the same diagnosis and invite them to a specialist clinic.
What is HSCIC’s role?
The Health and Social Care Information Centre (HSCIC) will provide a secure environment for the information and will be the data controller. HSCIC is a public body and is the central source of health and social care information in England. The role of the HSCIC is to ensure that high quality data is used appropriately to improve patient care. The HSCIC has legal powers to collect and analyse data from all providers of NHS care.
The HSCIC is committed, and legally bound, to the very highest standards of privacy and confidentiality to ensure that your confidential information is protected at all times. Access to information is strictly controlled.
Can anyone at HSCIC see my personal information?
When information leaves your GP practice, it will be sent to the HSCIC. The computer system at the HSCIC will link information from your GP record with other information held about you in the NHS such as hospital records, to create a new linked record. The process to create the linked record will be an automated process that also replaces any information that directly identifies you, such as your NHS number, address or date of birth with a code that does not reveal who you are.
In a small number of cases, it is necessary for HSCIC staff to check the data. However, this is only done following strict rules and processes that protect the confidentiality of the individual. Only the linked data record, which does not identify an individual, will be used by those planning health services.
Separately, there are limited circumstances when the law allows the HSCIC to pass on information that may identify you where there is special approval. But you can object to this sharing of your information.
What happens if my confidentiality is breached?
The HSCIC is committed, and legally bound, to the very highest standards of privacy and confidentiality to ensure that confidential information is protected at all times. Information in health records can only be shared beyond those caring for you where: (i) the law allows it (ii) there is a court order (iii) there is a public interest, or (iv) you have given permission
The Information Commissioner’s Office (ICO) has powers to impose heavy fines in the event of any breach of the Data Protection Act 1998 (the law which governs how your information is used by organisations, businesses and the government). It also sets out clear guidance in relation to whether data identifies you or not.
When will my information be used for research?
In most cases researchers carry out their studies using information that does not identify you and, only occasionally, medical researchers need to use information beyond that. Only researchers who have been granted special approval by an independent panel called the Confidentiality Advisory Group (CAG) are allowed access to your identifiable information. This group grants approval to a small number of research projects, which it considers to be in the public interest and for the benefit of the health service. Approval is only given in instances where anonymous information alone isn’t enough and where contacting individuals is not feasible due to the large number of patients used in the research. Another reason could be that access is also restricted to the specific information necessary for the research.
Examples of projects approved by CAG include a national study into people who have had a heart attack and a study on waiting times for cancer treatments and the effect of these waiting times on survival.
Do I have a say in what research my data is used?
No. Currently you have the right to say yes or no to your information being used for research, but the system does not let you have a say on the different types of research projects that come to HSCIC. However, if a researcher is working directly with your GP practice for their study then, unless there is special approval, your GP will check with you first if you are happy to share your information and be part of the study.
Could my data be sold or used by marketing, drug or insurance companies?
HSCIC does not charge researchers for data. Sometimes, the HSCIC may charge an administrative fee (for example, to link the data) but there is no commercial sale of NHS data.
Also, marketing and drug companies will not have access to information that identifies you unless you give your permission. For example, your GP practice could contact you and ask if you would be happy to take part in a clinical trial.
There are some limited circumstances when the NHS needs to carry out medical research using information that identifies you. However, special approval is required and again you would not be contacted by a third party unless you agreed to it in advance.
Finally, the HSCIC will not share information about you with insurance companies or solicitors. If an insurance company or solicitor wanted information about you they would approach your GP practice directly and you would need to give your explicit consent before any of your information could be shared with them. If you do not agree to their specific request for your information then it will not be shared with them.
What kinds of information sharing can I object to?
There are two types of information sharing you can object to.
1. You can object to information containing data that identifies you from leaving the GP practice. This type of objection will prevent the information held in your GP record from being sent to the HSCIC secure environment and also by those who have gained special approval to use health information for research.
2. You can also object to any information containing data that identifies you from leaving the HSCIC secure environment. This includes information from all places you receive care such as hospitals. If you do not object, information that identifies you will only leave the HSCIC in limited circumstances and only with special legal approval. If you object, confidential information will only leave the HSCIC in very rare circumstances, such as in the event of a civil emergency.
If I object will this stop all data leaving the practice?
No. The law requires doctors to provide some very limited information about certain things. The law says, for example, that doctors must provide information to local authorities about some infectious diseases, such as if you had food poisoning. Very rarely, doctors may also be required to disclose information in order to detect a serious crime. A court order can also require doctors to disclose certain information, for example during a court case.
I have opted out of the summary care record; do I still need to opt out of this system?
Yes, you should still talk to your GP. There are important differences between allowing the NHS to use your information for planning and research and the Summary Care Record (SCR). The SCR is used by health professionals to provide you with care. It would be wrong for us to assume that because you have chosen not to have a SCR that this means you also wish to stop the use of your information being used to improve health services.
Can I stop data being used from other places where I receive care?
Right now you can only object to data containing information that identifies you from leaving your GP practice. The current systems used in the NHS don’t allow any other service provider to see the note of your objection in your GP record. This means that some of the information held by hospitals and other NHS services about you will flow into the HSCIC system, where it is allowed by law. However, you can object to any information containing data that identifies you from leaving the HSCIC secure environment.
In the future, it should be possible for you to stop information containing details that identify you from going to the HSCIC from wherever you receive care in the NHS.