How Information About You Helps Us To Provide Better Care
Information about you and the care you receive is shared, in a secure system, by healthcare staff to support your treatment and care.
It is important that the NHS, can use this information to plan and improve services for all patients. We would like to link information from all the different places where you receive care, such as your GP, hospital and community service, to help us provide a full picture. This will allow us to compare the care you received in one area against the care you received in another, so we can see what has worked best.
Information such as your postcode and NHS number, but not your name, will be used to link your records in a secure system, so your identity is protected. Information which does not reveal your identity can then be used by others, such as researchers and those planning health services, to make sure we provide the best care possible for everyone.
How your information is used and shared is controlled by law and strict rules are in place to protect your privacy.
We need to make sure that you know this is happening and the choices you have.
Benefits of sharing information
Sharing information can help improve understanding, locally and nationally, of the most important health needs and the quality of the treatment and care provided by local health services. It may also help researchers by supporting studies that identify patterns in diseases, responses to different treatments and potential solutions.
Information will also help to:
• find more effective ways of preventing, treating and managing illnesses;
• 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, and help us to take action to prevent problems;
• improve the public’s understanding of the outcomes of care, giving them confidence in health and care services; and
• 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.
What will the NHS do with the information?
They will only use the minimum amount of information needed to help improve patient care and the services provided.
They have developed a thorough process that must be followed before any information can be shared. They sometimes release information to approved researchers, if this is allowed under the strict rules in place to protect your privacy. They are very careful with the information and they follow strict rules about how it is stored and used.
They will make sure that the way they use information is in line with the law, national guidance and best practice. Reports that they publish will never identify a particular person.
Do I have a choice?
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. If you do not want information that identifies you to be shared outside your GP practice, ask your practice to make a note of this in your medical record. This will prevent your confidential information being used other than where necessary by law, (for example, if there is a public health emergency).
You will also be able to restrict the use of information held by other places you receive care, such as hospitals and community services. You should let your GP know if you want to restrict the use of this information.
Your choice will not affect the care you receive.
Do I need to do anything?
If you are happy for your information to be shared 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.
If you have concerns or are not happy for your information to be shared, please speak to the practice.
How information about you helps us to provide better care
You can find out more on the NHS England Care Data website or NHS Choices website or by calling the National Patient Information Line 0300 456 3531
Sharing your data to help identify patients who would benefit from particular case/disease management.
More information about how your information will be shared and protected can be found in the following document. To opt out of sharing for risk stratification puposes you will need to opt out of the Summary Care Record scheme.
Information Sharing Protocol to Support the Implementation of Risk Stratification
Sharing your anonymised data for research
More Information can be found at
Please inform the practice if you do not wish for your data to be used for CPRD purposes.
What is "Joining Up Your Information"?
Giving local health and social care professionals directly involved in your care access to the most up-to-date information about you.
Developing a secure, online system that will make health and social care information from across the NHS locally and Gloucestershire social care available at the time and place you are being treated.
Joining Up Your Information to provide the highest quality co-ordinated and cost-effective treatment.
What sort of information do we want to share?
The shared information would typically include the kind of details that different health teams are often sharing already through telephone calls, letters and faxes. All the system will do is make the information available in a view-only format, electronically.
The types of information include:
- Medication and any changes to it made by a clinician
- Medical conditions
- Operations/treatment received
- Contact details for next-of-kin and others involved in care
- Tests that GPs or hospital clinicians have requested or carried out
- Appointments (past and planned) and recent visits to out-of-hours GPs and minor injury and illness units
- (To follow phase one) Documents, such as care plans and letters about treatment (for example “discharge summaries” following a hospital stay).
Why do we want to make more information available
Better sharing of information between family doctors, hospitals, ambulance crews, community and mental health teams as well as social care staff has the potential to deliver significant benefits, including:
- More appropriate, timely and safer care, for example by avoiding unnecessary or duplicate tests and procedures
- Reducing the need for unplanned admissions to hospital and, if you are admitted, reducing unnecessary time spent in a hospital bed
- Patients will spend less time answering questions they have already been asked in other parts of the care system
Information from across the NHS would be available 24 hours a day, thus reducing the time spent checking details from multiple sources or delaying the most appropriate treatment if, for example, a GP practice is not open at the time
An information-sharing control group (including clinicians, data protection specialists and patient group representatives) will be set up to control and monitor which information is shared and who should see it. The group will review any changes to the way the information might be used and ensure this is done in line with the Data Protection Act.
As treatment within the NHS develops, use of this information might allow health and social care professionals to improve the quality of your health and care services, ensuring they are safe, effective and well managed
Opting In & Out
We hope everyone will allow us to make key parts of their healthcare information available to NHS clinicians locally and social care professionals in Gloucestershire.
We are writing to every adult registered with a Gloucestershire GP practice telling them about this important step forward to help us provide the best and most efficient care that we can.
Patients who are happy to take part do not need to do anything.
Those who do not wish to have their details shared will have 12 weeks from the date the letter was sent to opt out using the methods described in the letter and information leaflet.
It is possible to change your mind at any time but after the 12 weeks you will need to visit the pratice to sign an opt out form.
All newly registered patients will be given information and a form when they register with the practice.
What if I opt out?
If I decide to opt out, how will this affect the treatment I receive?
While you are free to opt-out of sharing your information through Joining Up Your Information, it is important that you understand the implications of doing so.
GPs, hospitals, community health, mental health and social care teams all hold important information about patients but it is often not available to people working in other parts of your local NHS and care community.
This is because different parts of the system are using specialised but currently unlinked systems so important information in one part of the NHS may not be readily available to people treating you in another.
Doctors, nurses and other people providing care will base their treatment on the information they have about you – often relying on referral information from other health and social care colleagues.
They need this information to make sure you receive the best and most appropriate care, but if more details are needed you might have to repeat answers you have already given, fill out more forms or even undergo tests that have already been carried out at an earlier stage of your treatment.
It could also mean delays if, for example, a hospital consultant has to contact your GP surgery to confirm details – this is often by letter, fax or telephone.
The Joining Up Your Information project team is developing a secure online system that will make key parts of your medical records available whenever and wherever they are needed to staff who are directly involved in caring for you.
Remember, the details they will have access to are already being shared (by letter, fax or telephone, for example) – all we are doing is using secure technology to give authorised, qualified and regulated health and care professionals better access.
The right information, in the right place, at the right time.
More information is available on the JUYI website http://www.gloucestershireccg.nhs.uk/joiningupyourinformation/index.php