Your health and care data can help improve services

Using your joined up, anonymised health and care information can help us plan and design services that will improve the health, wellbeing, and care of all north central London residents. 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.

Anonymised health and care data will be used with three main aims:

1. Prevention and early intervention

Supporting health goals like better diet, more exercise, or stopping smoking
Preventing ill health or treating symptoms early
Spotting risks of disease and supporting earlier diagnosis

2. More joined up services

Increasing cooperation between GPs, community, and hospital care and with social care
Increasing the amount of care and support delivered out-of-hospital
Improving direct access to specialist advice and care for patients with chronic or long-term conditions
Reducing unnecessary admissions to hospitals

3. Value for money

Reducing the cost of treatments
Spending more on preventing illness or treating it earlier, instead of treating patients who are already seriously unwell.
Reducing management and administration costs
Increasing health and care staff job satisfaction so that we retain our trained staff and enable them to better look after people’s health.

How do I opt out?

You need to do this in writing by post or email. To opt out of sharing your health and care data for purposes other than direct care, please download and complete our opt-out form (click here to download the opt-out form) or obtain a leaflet from your GP practice.

We need your NHS number to be able to process your request to opt out. This is our only way to verify your identity. If you don’t know your NHS number please visit the NHS website by clicking here or ask your GP practice.

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

Web leaflet form in additional languages

if you require this leaflet in a language not listed above, please contact: nclicb.digitalhelpdesk@nhs.net

What does this mean for me?

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 we have a complete record.

This data will then have your name and other identifiers removed before being used for analysis and planning.

Using the health and care data of our residents in this way will help us to identify gaps in care and better understand what local people need.

It will support activities that:

Identify groups at risk of preventable or treatable diseases
Enable better prevention and proactive care
Help with planning and make accessing care easier

What does ‘secondary use’ mean?

Using your health and care data for planning is called ‘secondary use’ as it does not relate to your immediate or 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 anonymous data sets that are created 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 these for projects that aim to improve services. They will not be available to private companies or research organisations.

What are some of the ways this data may be used?

People working in the NCL Integrated Care will ask for permission to use specific data sets to answer questions they may have in working out how best to plan services. A Data Access Group will decide whether to approve their request.

Questions they might be looking to answer could include:

Are there any groups of patients that don’t access cervical screening? How could we make the service more accessible for them?
Who is less likely to have their annual flu jab? What’s the best way to reach them to check if they want one?
Are there any GP practices who are very good at getting vulnerable patients to have their annual health check? What can we learn from them?
What groups of people are less likely to use stop smoking services after a doctor refers them?

What type of data will be included?

The data 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).

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 is the legal basis for collecting this data?

The North Central London Integrated Care Board is not able to process your confidential patient information without consent and it is not practicable to request consent from all 1.8 million residents.

For this reason, we have obtained consent from the Secretary of State by applying to the Health Research Agency Confidentiality Advisory Group (HRA CAG) for permission for the secondary use of patient data for specific purposes. This is done under Regulation 5 of the Health Service (Control of Patient Information) Regulations 2002 (‘section 251 support’). We are now allowed to process confidential patient information without consent for these three specific purposes:

Preventing ill health, identifying and ranking risks and intervening early.
Managing population health
Planning and general analysis

What if I don’t want my health and care information 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 of the secondary use of your health and care data. Sharing your health and social care information will make it easier for us to plan and provide services to 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 do I return the form?

To return the form please put it in the post it to (no postcode or stamp required):

FREEPOST NLP – JOINED UP CARE RECORD

Downloaded forms can also be sent electronically by email but because there is no encryption with emails, we do not advise sending your confidential information in this way. You can send your completed form to nclicb.digitalhelpdesk@nhs.net

Important: Do not send National Data Opt-Out forms to this address as they will not be processed.

Can I change my mind and opt back in?

If you have opted out and you change your mind, you can decide to opt in again at any time. To opt back in, contact us and request an opt in form, email nclicb.digitalhelpdesk@nhs.net or call 020 3198 8738 (Monday – Friday 9am – 5pm).

When we receive the completed form, we will add your health records to the shared records system based on your selected preference.

How can I ask further questions or get more information?

Residents’ leaflet

For more information or if you have any questions, please contact: nclicb.digitalhelpdesk@nhs.net or call our enquiry line on 020 3198 8738 (Monday – Friday, 9am – 5pm).

Secondary Use Privacy Notice