PIF guide: What is patient data?

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 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 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.