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How we use your info

Frequently Asked Questions

Yes. You can object to sharing your information in the London Care Record, Universal Care Plan and eMHA by Thalamos system.

Not sharing may mean that it will take the people who are caring for you (such as nurses, doctors and social workers) longer to work out the best way to help you.

Sharing information is often very important for your care. When staff are more informed, it helps them to make the right decisions quickly, providing better and safer care. This is especially important during emergency situations or out of normal working hours.

Only health and social care professionals involved in your care are allowed to access your information. These people are viewing your record to give you the best quality care they can.

If you have concerns about your data being shared, you can raise an objection. However, if you do register an objection, you should understand that it could negatively impact the care you receive. If health and care staff are unable to access your medical record –

  • It might mean that tests or investigations are repeated because results from other organisations can’t be viewed
  • You may need to repeat the same information to different NHS staff
    • The staff treating you won’t be able to see what has happened to you in different parts of the NHS or social care
    • They might not know what medication you’re taking or whether you have any care plans in place
    • It will not stop health and care staff contacting one another to ask questions about your history
    • They may not be able to keep you and others safe from harm

If you have concerns about your data being shared and want to raise an objection, the best way to do this is by contacting the staff who are providing your care.

Some parts of London offer a central process for objecting to information being shared in the London Care Record. You can find out more below:

If you choose to object, you are only objecting to electronic sharing of your medical record in the London Care Record. Other information sharing projects – such as that National Care Records Service – are operated and managed separately, so you need to object to each programme individually.

There may be circumstances where your objection may not be upheld. For example if there is a safeguarding issue, or in the case of an individual who might be at risk from harming themselves or a member of the public, or in an emergency.

In the vast majority of cases, your healthcare professional will discuss creating a Universal Care Plan with you, before creating your care plan.

In a small number of cases where it may be in your best interest to have a care plan e.g. if you lack capacity to make care planning decisions that may benefit your health, a care plan may be created on your behalf with an attorney, a loved one or by your clinician. 

Please do contact us to discuss this further as required.

If you no longer wish to have a care plan accessible to health and care professionals or you do not wish to have a care plan created for you in the first instance, you should speak to your healthcare professional. We ask you to think carefully before making this decision as sharing your health and social care information will make it easier for services to provide the best treatment and care for you.

If you choose to opt-out:

  • You may have to answer questions repeatedly because your full history may not be available to the care professional assessing you.
  • Decisions about your care may take longer, even in emergency situations, as history needs to be confirmed.
  • Your choices and wishes regarding your care will not be known to emergency services if you become unconscious or do not have the capacity to make your wishes known.

You have the right to object or opt out of your data being used in the London SDE for planning or research purposes as well as for the purposes of helping to identify, support and treat those at risk of ill-health. There are a number of ways of doing this.  You can opt-out of your data being used for planning or research purposes for any project across the NHS using the National Data Opt-Out service. More information is available on the NHS Digital website.

You can use the Local Data Opt Out to stop your information being used by the London SDE for planning and research purposes. You can do so by:

  • writing to us via email: NELondonicb.oneLondon.opt-out@nhs.net  (Please use the subject line “Opting-Out”)
  • writing to us via post: One London Service Desk, North East London Integrated Care Board, Unex Tower, 5 Station Street, London, E15 1DA
  • calling us: 0203 182 2900 A voicemail service operates 24 hours a day 7 days a week. Please leave a message providing us with your contact name, telephone number and the fact that you would like to opt-out of your data being used for secondary purposes. We will contact you to process your request within office hours (Monday – Friday 09:00 – 17:00)

If you have a complaint about how your request has been handled email us via NELondonicb.oneLondon.opt-out@nhs.net and include ‘complaint’ in the subject.

You may be requested to provide some or all the following information:

  • Full name;
  • Address;
  • Email address;
  • Date of Birth;
  • NHS Number.

In some cases, you may also be asked to provide evidence of an ID document to help verify your identity.

However, you are free to provide as much or as little information as you want but providing more information is better for accuracy.

Yes, you can opt out of your information being used for research and planning purposes while still allowing your information to be used for the provision of your direct care and treatment. Recording a local opt-out will stop your information being used for all secondary purposes, including both research and planning of health and care services for the London Region.

Recording a National Data Opt-Out will stop your information being used for all secondary purposes, including both research and planning of health and care services anywhere in the NHS.

When you opt out of sharing your data in the London SDE, this applies across all of London, not just your specific area. This is because the London SDE collects and links patient information from all parts of London, so opting out of sharing of your data affects data use on a city-wide basis. 

If you would like to prevent your patient information being shared outside your GP or health and care provider, you can exercise your Right to Object with the respective individual data controller (i.e. your GP), and object to the sharing of your patient information outside that setting.

Yes, you can opt back in if you change your mind. You can opt back in verbally or in writing via:

  • writing to us via email: NELondonicb.oneLondon.opt-out@nhs.net  (Please use the subject line “Opting-In”)
  • writing to us via post: North East London Integrated Care Board, Unex Tower, 5 Station Street, London, E15 1DA
  • calling us: 0203 182 2900 A voicemail service operates 24 hours a day 7 days a week. Please leave a message providing us with your contact name, telephone number and the fact that you would like to opt-in for your data being used for secondary purposes. We will contact you to process your request within office hours (Monday – Friday 09:00 – 17:00)You will need to provide some or all of the following information:  
  • Full name;
  • Address;
  • Email address;
  • Date of Birth;
  • NHS Number.

The London SDE is comprised of two separate databases. The first is used to provide access to patient information to support direct care and treatment. The second is to provide access to information to support planning and research. 

Right to Object: If your request to object to any and all processing of your data by London SDE (including for your direct care and treatment) is approved your data will be restricted from use within the London SDE. 

National Data Opt-Out (NDOO) and Local Data Opt-Out (LDOO): Upon application of NDOO and LDOO, we will continue to keep your information on the database to support your direct care and treatment. However, your information will not be kept on the database that supports planning and research.

Yes, you can make a right to object request or request to opt-out on behalf of someone who is under the age of 13, or who lacks capacity, if you have a formal and legal relationship to act on behalf of them (i.e. parent or legal guardian with parental responsibility, court order, and lasting power of attorney).

If you are a parent or legal guardian to a child under the age of 13, you can object or opt out on their behalf. 

If you are the parent or legal guardian to a child above the age of 13, you can only object or opt out on their behalf if they lack the capacity to consent and you have a legal proof to act in proxy through a court order or a lasting power of attorney.

If you are a parent or a legal guardian to a child under the age of 13, you can object or opt out on their behalf. However, you can only object or opt out on behalf of your partner or any other family member, if you have a formal and legal relationship that allows you to act on their behalf (i.e. a court order or a lasting power of attorney).

Yes, you can request to see the information we have about you. To do this, you’ll need to submit a request, called a ‘data subject access request’ (DSAR) to the respective health and care organisation in London responsible for your care – this may your GP or your hospital or both. They will help you obtain a copy of the information they hold about you, which is the same information we have in our systems.

For the Universal Care Plan you can ask a health and care professional involved in your care for a printed copy of your care plan so you can share this with loved ones or have it filed at home.

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