Cornwall and Isles of Scilly linked data

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 and a better understanding of all of your health conditions and your 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, that your health and care needs are met, that 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 ensure your data is shared between the Health and Care professionals involved in your pathway and by producing a ‘linked dataset’.

How could my information be used in the future?

The current ‘linked dataset’ uses anonymous data (individual patients 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

Although the anonymous data allows those running health and care services to better understand how health is changing, the best ways to plan services, etc, the longer term aim is to use the linked data set to identify individuals who would benefit from a particular service or treatment thus improving their overall health and their quality of life. Clinicians, such as GPs, and care givers (with relevant security protection) would be able to identify individual patients, so that their care can be better tailored to their personal needs and circumstances, and bring those improvements to their quality of life and their health outcomes. This would require the inclusion of other data items in the dataset such as your date of birth.

GP feedback

Dr Tamsyn Anderson, interim joint medical director of Cornwall Partnership NHS Foundation Trust explains: “As a GP committed to improving how we work together as system partners in Cornwall and the Isles of Scilly I am really excited about the potential opportunities the developing linked data set gives us. Many people’s care involves an increasing number of diagnoses and services delivered by different organisations. Being able to review data for a population, rather than just at an organisational level, gives us the ability to see the whole picture of individuals’ health and care and where we can focus to improve experience and outcomes for people. We are already using it to help us design services around people living with multiple long term conditions and there are many other exciting areas to be explored.

“The GP feedback section should end on We are already using it to help us design services around people living with multiple long term conditions and there are many other exciting areas to be explored.”

Safeguards in place for data storage

The Cornwall and Isles of Scilly Health and Care Partnership are overseeing the linked data set programme and are bound by the information sharing agreement they have all 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 Cornwall and Isles of Scilly 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 engaged in the delivery of care in Cornwall and Isles of Scilly will never knowingly or unknowingly share your information without there being a legal basis to do so; this includes selling your data to external organisations.

We will on occasion contract for an external organisation to help us with analysis of activity but this is done in a controlled way, the data remains the property of the providing organisation.

We never sell your data, 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 your GP or through the national opt-out programme https://www.nhs.uk/your-nhs-data-matters/.

What is the impact if I opt out?

If you do choose to opt out, your personal information will not be used for research or planning purposes.

Your individual care will not be affected if you opt out.

Confidential patient information is used to improve health, care and services across the NHS, for example for monitoring patient safety, developing new treatments or 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. You can find out more at https://understandingpatientdata.org.uk/news/national-data-opt-out-impact

For more information on this project

For more information about the Cornwall and Isles of Scilly linked data set or obtaining this document in an alternative format, please e-mail shapingourfuture.cios@nhs.net.