Data Sharing

Why information is collected about you, the ways in which this information may be used and who will be collecting it

NHS Data Sharing and National Data Opt-Out

Your health and care information is used to improve your individual care.  it is also used to help research new treatments, decide where to put GP clinics and plan for the number of doctors and nurses in your local hospital. Wherever possible the NHS tries to use data that does not identify you, but sometimes it is necessary to use your confidential patient information.

Who can use your confidential patient information for research and planning?

It is used by the NHS, local authorities, university and hospital researchers, medical colleges and pharmaceutical companies researching new treatments.

Making your data opt-out choice
You can choose to opt out of sharing your confidential patient information for research and planning. There may still be times when your confidential patient information is used: for example, during an epidemic where there might be a risk to you or to other people’s health. You can also still consent to take part in a specific research project.

You do not need to do anything if you are happy about how your confidential patient information is used

If you do not want your confidential patient information to be used for research and planning, you can choose to opt out securely online or through a telephone service.  

to find out more or to make your choice visit  nhs.uk your data matters or call 0300 303 5678.

This opt out will not prevent invitations to current and future health screening programmes 

Summary Care Records

All patients registered with a GP have a Summary Care Record, unless they have chosen not to have one. The information held in your Summary Care Record gives registered and regulated healthcare professionals, away from your usual GP practice, access to information to provide you with safer care, reduce the risk of prescribing errors and improve your patient experience.

Your Summary Care Record contains basic (Core) information about allergies and medications and any reactions that you have had to medication in the past.

Some patients, including many with long term health conditions, previously have agreed to have Additional Information shared as part of their Summary Care Record. This Additional Information includes information about significant medical history (past and present), reasons for medications, care plan information and immunisations.

Change to information held in your Summary Care Record

During the pandemic, the Department of Health and Social Care removed the requirement for a patient’s prior explicit consent to share Additional Information as part of the Summary Care Record.

This is because the Secretary of State for Health and Social Care issued a legal notice to healthcare bodies requiring them to share confidential patient information with other healthcare bodies where this is required to diagnose, control and prevent the spread of the virus and manage the pandemic. This included sharing Additional Information through Summary Care Records, unless a patient objected to this.

If you have already expressed a preference to only have Core information shared in your Summary Care Record, or to opt-out completely of having a Summary Care Record, these preferences will continue to be respected and this change will not apply to you. For everyone else, the Summary Care Record will be updated to include the Additional Information.

This change will be continued after the coronavirus (COVID-19) pandemic period.

Why we have made this change

In order to look after your health and care needs, health and social care bodies may share your confidential patient information contained in your Summary Care Record with clinical and non-clinical staff in other health and care organisations, for example hospitals, NHS 111 and out of hours organisations. These changes will improve the healthcare that you receive away from your usual GP practice.

 

Your choices in relation to your Summary Care Record

Regardless of your past decisions about your Summary Care Record preferences, you will still have the same options that you currently have in place to opt out of having a Summary Care Record, including the opportunity to opt-back in to having a Summary Care Record or opt back in to allow sharing of Additional Information.

You can exercise these choices by doing the following:

  1. Choose to have a Summary Care Record with all information shared. This means that any authorised, registered and regulated health and care professionals will be able to see a detailed Summary Care Record, including Core and Additional Information, if they need to provide you with direct care.
  2. Choose to have a Summary Care Record with Core information only. This means that any authorised, registered and regulated health and care professionals will be able to see limited information about allergies and medications in your Summary Care Record if they need to provide you with direct care.
  3. Choose to opt-out of having a Summary Care Record altogether. This means that you do not want any information shared with other authorised, registered and regulated health and care professionals involved in your direct care. You will not be able to change this preference at the time if you require direct care away from your GP practice. This means that no authorised, registered and regulated health and care professionals will be able to see information held in your GP records if they need to provide you with direct care, including in an emergency.

To make these changes, you should inform your GP practice or complete this form and return it to your GP practice.

 

 

The Care and Health Information Exchange (CHIE)


The CHIE is a secure system which shares health and social care information from GP Surgeries, hospitals, community and mental health, social services and others in and around Hampshire and the Isle of Wight. Only health and social care professionals who are involved in your care are allowed access to your record and can identify your from it. Your information is also used to improve future care for you, your family and for other patients.  This helps plan NHS services and supports medical research.  To keep your information safe it is moved to a separate database called ‘Care and Health Information Analytics’ (CHIA) and changed so that it cannot be used to identify you.  Your data is never shared for the benefit of commercial companies like drug manufacturers.  People who analyse data on CHIA do not have access to CHIE so cannot identity you.

For more information: visit www.CHIE.org.uk.

Confidentiality
We maintain our legal duty of confidentiality to you at all times. We will only ever use or pass on information about you if others involved in your care have a genuine need for it. We will not disclose your information to third parties without your permission unless there are exceptional circumstances, such as when the health or safety of others is at risk or where the law requires information to be passed on.

Access to data
You have a right under the Data Protection Act 2018 to find out what information we hold about you. This is known as ‘the right of subject access’. If you would like to make a subject access request, please do so in writing to the practice manager. If you would like to know more about how we use your information, or if you do not want us to use your information in this way, please contact the practice manager.

Benefits of sharing information
Sharing information can help improve understanding, responses to different treatments and potential solutions. Information will also help to:

  • Provide better information to out of hours and emergency services
  • Prevent prescribing of medication to which you may already have an allergy
  • Make more informed prescribing decisions about drugs and dosages Avoid unnecessary duplication in prescribing
  • Increase clinician confidence when providing care
  • Results of investigations, such as X-rays and laboratory tests
  • Reduce referrals, ambulance journey admissions, tests, time wastage and visits to healthcare premises
  • Find out basic details about you, such as address and next of kin

Do I have a choice?
If you do not wish your records to be shared on a Summary Care Record (SCR) or on the Care and Health Information Exchange (CHIE) complete the Data Sharing Choices form  below. You can change your mind at any time, just complete another form.

Objecting on behalf of others
If you are a carer and have a Lasting Power of Attorney for health and welfare then you can object on behalf of the patient who lacks capacity. If you do not hold a Lasting Power of Attorney then you can raise your specific concerns with the patient’s GP.

If you have parental responsibility and your child is not able to make an informed decision for themselves, then you can make a decision about information sharing on behalf of your child. If your child is competent then this must be their decision.

General Practice Data for Planning and Research (GPDPR) - This project is being re-evaluated see further information here