Cornwall and Isles of Scilly linked data

This page provides information on the Cornwall and Isles of Scilly linked dataset. For more information, please email the ICB information team.

Page contents

What is a linked dataset?

A linked dataset takes information from all of your health and care records, wherever they are stored, and:

• joins it up to enable a full view of your interactions with local services
• gives a better understanding of all your health conditions and care needs

How is my information used now?

In Cornwall and the Isles of Scilly, health and care partners want to make sure:

• you are looked after to the highest standards
• your health and care needs are met
• health and care professionals involved in your care work together more smoothly and with you as a complete team

It is essential that health and care professionals have access to all the information they need to make the best evidence based recommendations about your care and to keep you well. The best way to do this, is to make sure your data is shared between the health and care professionals involved and produce a linked dataset.

How could my information be used in the future?

The current linked dataset uses anonymous data. Individuals cannot be identified within the dataset. The anonymised data does include information about an individual’s health and care but it does not include:

• name
• date of birth
• phone number
• email
• address
• NHS number

The anonymous data allows health and care services to better understand:

• how health is changing
• the best ways to plan services

For example, the longer term aim is to use the linked data set to identify people who would benefit from a particular service or treatment and improve their overall health and quality of life. Clinicians, such as GPs, and care givers with relevant security protection, would be able to identify people, and:

• tailor their care to their personal needs and circumstances
• improve their quality of life and health outcomes

This would require the inclusion of other items in the dataset, such as your date of birth.

Safeguards in place for data storage

The Cornwall and Isles of Scilly Integrated Care System are overseeing the programme and are bound by the information sharing agreement they have signed. The data is processed in a dedicated database hosted within Cornwall. All of the health and care organisations have legal responsibilities under the Health and Care (Safety and Quality) Act 2015 to share information where this will facilitate care for an individual.

The linked data set will be held according to strict security rules governing how data is stored and managed in the UK. These rules comply with data protection law and NHS guidance on managing health and care data.

Is my data sold?

No. Health or social care providers will never knowingly or unknowingly share your information without there being a legal basis to do so.

Sometimes we will contract an external organisation to help us with analysis of activity. This is done in a controlled way and the data remains the property of the providing organisation.

We never sell your data to external organisations. Your personal data can only be accessed by those with a legitimate purpose for doing so.

How can I opt out?

It is your choice to share information for the Cornwall and Isles of Scilly linked data set. If you don’t want to share your information, you can opt out at any time via the national opt out programme.

What is the impact if I opt out?

If you choose to opt out, your:

• personal information will not be used for research or planning purposes
• individual care will not be affected

Confidential patient information is used to improve health, care and services across the NHS.

For example:

• for monitoring patient safety
• developing new treatments
• planning NHS services

Having data about as many people as possible ensures that NHS can make the best possible decisions. For example, if lots of people from a particular age group, ethnic minority or local area opt out, then that group will not be represented in research findings. Find out more on the Understanding Patient Data website.