PIF TICK guide

What is patient data?

Patient data is from people like you and me. There are lots of times when it is collected during your life, for example when you visit a GP or hospital.

Patient data can be used to:

• Develop new treatments
• Make medicines and surgery safer 
• Understand how many people have health conditions
• Increase understanding of symptoms
• Plan health services 
• Share patient experiences
• Create evidence-based health information 

Some examples of patient data

This table shows common types of patient data.

GP dataNHS Digital collects patient data from GPs including test results, physical health and mental health. You can opt out of your data being shared with NHS Digital or being used for research and planning.
Hospital dataHospitals record the number of people they treat. For example, A&E visits or surgery. This is anonymous and you do not need to give consent.
Patient registryRegistries contain data on patients with a specific condition. They help doctors develop care standards. You can opt out of patient registries.
Clinical trials and research studiesIf you take part in a clinical trial or study you will be asked to consent to your data being used.
New medicinesThe Drug Safety Research Unit collects data on the health of patients prescribed some new medicines. This data is submitted on a voluntary basis by GPs. You do not need to give consent for this data to be shared.
Reporting side effectsYou can report side effects to the Medicines and Healthcare products Regulatory Agency. This is called the Yellow Card Scheme. The data will be used to understand the safety of treatments.
Health apps and websitesYou can agree to share your data with health websites, apps or devices like step counters.
SurveysSurveys about health will let you know if they are collecting personal data.

So, why share?

You can opt out of some data collection.
But choosing to share helps build clinical evidence.

This is used to create trusted information and helps people make decisions about their treatment and care.

What about my privacy?

Everyone has different views on how their data is used. You have rights under privacy law. Consent forms or privacy statements should explain:

• How your data will be used
• Why it is being collected
• If you will be identified

Download the PDF guide

What is patient data?

Published October 2021
Reviewed: September 2023
Next review date: September 2026

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