About your Health Data

The NHS South Yorkshire Integrated Care Board (ICB) wants to make better use of data to improve people’s wellbeing. Working across different organisations in the health and care sector, including the NHS, councils, care providers, hospices, Healthwatch and the voluntary, community and social enterprise sector, we can make a positive difference to people’s lives. This can be supported by joining the data dots to tackle health inequalities we know exist across South Yorkshire. 

For example, some health and care services experience high numbers of childhood asthma in a particular neighbourhood or area. This can be due to several factors such as poor, damp housing, lack of parental understanding about their child’s inhaler techniques and / or access to regular health follow-ups. 

These pages explain how and why we use your information, the different purposes, and the benefits that data-driven healthcare brings to the NHS and you as a patient.

Why do we collect your data?

Your data plays a crucial role in improving the NHS as a whole. By analysing health data, we can:

  • Identify trends and improve patient outcomes.
  • Monitor and enhance the quality of care provided across the NHS.
  • Allocate resources more effectively.
  • Develop preventive measures to combat health crises, like COVID-19

There are also some other ways we specifically use your data:

  • Commissioning – using data to plan and design what services we need for our population.
  • Population health management (PHM) – using data about our patients, public and communities from a range of sources including health but also our demographics, social care, education to understand better the health needs and outcomes of our diverse population.
  • Risk stratification – a method that uses algorithms to predict and identify those patients who are most at risk from a condition and who might benefit from care. Data used in risk stratification can be re-identified by your clinician so they can provide direct care.  
  • Research - support clinical research that leads to innovation and develop new treatments or improvements in services. This is done with trusted resource partners such as the University of Sheffield and is a valuable asset in making sure we are making the best evidence-based decisions.

What do we collect?

This mainly consists of Commissioning Data Sets from NHS Digital.

We also collect data directly from Partners to supplement the national data sets and ensure local knowledge and services are right for the people of South Yorkshire

We are also working with your GP to see how we can link your GP records to these datasets such as hospital admissions data so we can look at health across the whole care pathway.

What is the legal basis behind this use of data?

The Data Protection Act 2018 and the UK GDPR is the main piece of legislation governing the way organisation can use identifiable data about individuals. Under this legislation there are a range of legal basis under which organisations are able to justify their processing of information.

For all the purposes for which the ICB would your patient data, the legal basis under GDPR are:

  • Article 6(1)(e) – processing is necessary for the performance of a task carried out in the exercise of official authority vested in the controller.
  • Article 9(2)(h) – processing is necessary for the purposes of the provision of health or social care or treatment or the management of health or social care systems and services.

Whilst not in the form of written legislation, the Common Law Duty of Confidentiality is a legal obligation that arises from case law and tradition, requiring the protection of private information provided in circumstances where there’s an expectation of privacy.

This means that when someone shares private information with another person or organisation, that information must be kept secret unless the person gives permission for it to be shared. This duty applies in situations where there’s an expectation of privacy, like between a doctor and patient or lawyer and client.

There are a few exceptions where confidential information might be shared without permission. These include if there's a legal requirement (like a court order), if it’s necessary to protect someone’s safety, or if the public interest outweighs the duty of confidentiality. But in general, the person or organisation receiving the information must protect it and not misuse or disclose it without good reason.

How is my identity protected?

Within the NHS information about patients is collected for the primary purposes of delivering healthcare to that individual. We are not allowed to use information from personal records of service users that contain their identifiable data, so we receive de-identified information (using a process known as pseudonymisation) and use that for the various purposes noted above.

The data we have will never be linked to a person’s name or address so they cannot be identified by it. The de-identified will be processed in a secure and confidential manner and in strict accordance with legal obligations including where applicable the NHS Digital Data Sharing Framework Contract and any Data Sharing Agreements which the integrated care board has entered with NHS Digital.

Who do we share data with?

Via a sub-licensing agreement with our partners (such as hospitals, councils, ambulance trusts) we can share linked de-identifiable data with them so they can use your data too for the purposes outlined above.  

We may also share your de-identifiable data with research partners.

We have an approval group to oversee and monitor who is accessing your data and why.

What if I don’t want my data to be used this way?

You are in control of how your NHS data is used for secondary purposes - We will not use your data for purposes outlined above if you have chosen to opt out.

There are various routes of opting out, each with different scope and outcomes.

Type 1 Opt-out

A Type 1 Opt-out will stop your data being shared by your GP practice.

To do this you need to fill in an opt-out form and return it to your GP surgery.

Only your GP surgery can process your opt-out form. They will be able to tell you if, and when, you have been opted out.

If you choose a Type 1 Opt-out, your GP will not share your data for research and planning. However, NHS England will still be able to collect and share data from other healthcare providers, such as hospitals.

National Data Opt-out

The National Data Opt-out will stop NHS England, the ICB and other health & care organisations from sharing your data for research and planning.

To do this you can either complete an online form, or contact via phone, email or post. All of these options are available via the NHS.uk Manage Your Choice  page.

South Yorkshire Data Opt-out

We will also apply a South Yorkshire local opt-out option. If you would like to stop South Yorkshire Integrated Care System from using your data, please find the details here (coming soon)  

With all of these options, you can opt-out, or opt back in again, at any time.

When your choice does not apply

If you choose to stop your confidential patient information being used for research and planning, your data might still be used in some situations:

  • When required by law - If there's a legal requirement to provide it, such as a court order.
  • When you have given consent - If you have given your consent, such as for a medical research study.
  • When there is an overriding public interest - In an emergency or in a situation when the safety of others is most important. For example, to help manage contagious diseases like COVID-19 and stop them spreading.
  • When information that can identify you is removed - Information about your health care or treatment might still be used in research and planning if the information that can identify you is removed first.
  • When there is a specific exclusion - Your confidential patient information can still be used in a small number of situations. For example, for official national statistics like a population census.

Data used for your care

If you choose to opt out of sharing your data for secondary purposes, your personal health information will still be used to make sure you get the treatment and care you need.

For example, your data may be shared so that you can be referred to hospital or get a prescription.

Contact Us

If you have any questions or concerns about how your data is being used, or if you would like to exercise your rights regarding your data, please reach out to the Data & Insights team at:

Your data is vital in helping us build a stronger, more resilient NHS that benefits all. Thank you for your continued trust in South Yorkshire Integrated Care Board