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 data||NHS 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 data||Hospitals 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 registry||Registries 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 studies||If you take part in a clinical trial or study you will be asked to consent to your data being used.|
|New medicines||The 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 effects||You can report side effects to the MHRA (Medicines & 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 websites||You can agree to share your data with health websites, apps or devices like step counters.|
|Surveys||Surveys about health will let you know if they are collecting personal data.|
So, why share?
You cannot opt out of all 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?
Publish date: October 2021
Review date: October 2023
View the PIF guide to making sense of risks and benefits.
View the PIF guide to finding trusted health information.
View the PIF guide to clinical evidence and the pyramid of evidence.
View the PIF guide to understanding patient data.