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The NHS in north London is preparing to begin combining patient data with the aim of improving services. An opt out is available and volunteers are being recruited to the committee which will oversee use of the data.

diagram showing out ncl ics will integrate patient dataDiagram showing the types of patient data that will be accessed and its uses (Source: Information and opt-out leaflet issued by NCL ICS)

The data will be used by the North Central London Integrated Care System (NCL ICS), a "partnership" of NHS, councils, and voluntary sector organisations covering the London Boroughs of Barnet, Camden, Enfield, Haringey and Islington.

The data to be "joined up" will include dates, outcomes of hospital visits, upcoming appointments, referrals, prescribed medications, allergies, investigations (for example blood tests), diagnoses, support plans, and risk factors (for example smoking).

Individuals can opt out of their data being used by post or email or by filling out a form available at GP surgeries.

In preparation for the new arrangements, NCL ICS is recruiting four volunteer Resident Community Champions to join its Data Access Group, which will make decisions about the use of patient data.

The NCL ICL website does not give any indication of when data sharing is due to commence or any deadline for opting out.

The deadline for applying to apply to be one of the Resident Community Champions is 17th March.

More information at the links below.

Your health and care data can help improve services

Text of leaflet in PDF format exported to a mobile-friendly format. The authoritative version is at this link.

Across North Central London (NCL), we want to prevent people getting sick, act sooner when they do, support them to best manage their own health, and reduce health inequalities.

GPs, hospitals, care providers, and voluntary organisations are working together to support healthier lives for all our residents. We are joining up your health and care records and using this information to help us plan and design services that will improve the health, wellbeing, and care of all NCL residents.

What does this mean for you?

Data from your local NHS and care records will be linked to your national healthcare data (if you have accessed NHS services outside London) using your NHS number, name, date of birth and address to make sure this is correct, and that we have a complete record.

This data will then have your name and anything else that might identify you removed before being used for analysis and planning.

diagram showing out ncl ics will integrate patient data smaller version

This will support activities that:

  • identify groups at risk of preventable or treatable diseases
  • enable better prevention and proactive care
  • help with planning and improve access to services.

 

What are the benefits of linking my data in this way?

While you may not benefit immediately, the improvements to services that will result will benefit you, your family, or your community. Our aim is to improve everyone’s health, focusing on groups of all descriptions which have worse outcomes than we would expect.

We are using this data to focus on three main areas:

1. Prevention and early intervention.
2. More joined-up care.
3. Better value for money.

What does ‘secondary use’ mean?

Using your health and care data for planning in this way is called ‘secondary use’ as it does not relate to your personal care.

Who will access my health and care data?

For purposes known as secondary use (see above), direct access to your personal data is only permitted to link your data together. This is done by a special team of developers within the NHS North Central London (NCL) Integrated Care Board.

The data that is created will have personal information (such as name, address, date of birth) removed before it is used and will only be available to those working in health and social care in North Central London (GPs, NHS hospital and community services, the NCL Integrated Care Board, and local authorities in NCL). They will have only access to this information for projects that aim to improve services. This information will not be available to private companies or research organisations.

What type of data will be included?

The data will include dates, outcomes of hospital visits, upcoming appointments, referrals, prescribed medications, allergies, investigations (such as blood tests), diagnoses, support plans, and risk factors (such as smoking).

We will only include the standardised part of the clinical record, such as medicines prescribed, medical readings, and dates. No comments or notes will be included.

What if I don’t want my health and care data used in this way?

You have a choice. If you do not want to share your data for purposes other than your direct care, you can “opt out”. This is your right. However, we ask you to think carefully before opting out. Sharing your health and social care information will make it easier for us to plan and provide services that support the needs of everyone in North Central London. For this to work well, we need to have as complete a picture as possible. We really value the trust you place in us and will treat your data with the utmost respect.

How to opt out

You can opt out of sharing your data this way at any time by completing the form
below and sending it by freepost to:

FREEPOST NLP – JOINED UP CARE RECORD

You can also download a copy from our website here: nclhealthandcare.org.uk/digital

Downloaded forms can be sent electronically by email to the address below. However, because there is no encryption with email, we do not advise sending your confidential information this way.

Contact us

You can contact our helpdesk for more information.

Email:

Phone: 0203 198 8738

[To download the opt-out form visit https://nclhealthandcare.org.uk/wp-content/uploads/2023/12/WEB-LEAFLET-Form-Your-health-and-care-data-can-help-improve-services-3-Final-30.11.23.pdf]

Your health and care data can help improve services (page on the NCL ICS website which also includes instructions for how to opt out of data sharing)

Download an explanatory leaflet incorporating an opt-out form

Join our Data Access Group to have your say on the use of North Central London resident health and care data

 

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