Patient data is health-related information about patients created or used as part of their NHS care. It is collected and recorded when visiting the GP, hospital, or specialists; participating in clinical trials, cohort studies or patient surveys; and using digital technologies like apps and trackers.

The vital role of patient data in medical research

As well as being crucial for our individual care, patient data has vast potential to advance medical research and deliver significant health benefits to patients.

Researchers funded by our member charities rely on the access and use of patient data to better understand, diagnose and treat disease, as well as improve patient care.

Patient data can be linked up and analysed to benefit patients in many ways, including:

• Better understanding, prediction and diagnosing of disease
• Developing new treatments
• Improving patient care
• Monitoring the long-term safety of drugs
• Planning services within the NHS

You can find out how patient data is used by our member charities to save and improve lives in this booklet. Further case studies can be found on this page.

To explore our policy work in this area take a look at our position statement and consultations responses relating to patient data.

Public attitudes to the use of patient data

People are generally comfortable with anonymised data from their medical records being used for improving health, care and services, for example for research, if there is a public benefit. The more informed people feel, the more likely they are to support these uses but many are uncomfortable with the idea of companies accessing their health data.

Our member charities have found that…

• 77% of the public are willing to share their anonymised medical records for the purposes of medical research (Wellcome Trust report)
• 97% of brain tumour patients are willing to share their medical and health data to help improve treatment and care (The Brain Tumour Charity report)
• 88% of people with asthma would be willing for their confidential health data to be used for service improvement (Asthma UK report)

We work closely with Understanding Patient Data who support better conversations about patient data. They have key messages and resources for answering questions and concerns about how it’s used.

Charity-supported patient registries

Patient data registries hold large collections of patient data in a central hub and are often disease specific.

Several of our member charities fund patient data registries and this report highlights the innovative ways they’re using them to benefit patients.

You can read more about the potential and challenges of registries in our blogs.