Patient data

Find out what we believe about the use of patient data for health research.

This policy statement has been developed with advice and guidance from people with Parkinson's, the people who love and care for them, health and social care professionals and other experts.

What we believe about patient data

Patient data are vital to health research and data need to be shared efficiently within the NHS.

There should be strong commitment from the NHS to ensure the safe and secure sharing of data for health research purposes.

It is important to have safeguards in place to protect patient confidentiality while allowing medical researchers to have access to patient data.

Why we believe this

Patient data can be used to identify new treatments and therapies and understand the causes of Parkinson's.

Data from patient records can help with many areas of research such as looking at the safety and value of drugs, evaluating new treatments and informing health care management.

What's the evidence?

From a survey conducted with Parkinson's UK members across the country, 90% (241 people) reported that NHS data should be available to researchers.

There was also a general consensus that although patient data should be made available for research, it is important to have safeguards in place. 78% of those surveyed stated that data used for research should be anonymised or coded.

Full policy statement

Parkinson's UK policy statement: Patient data (PDF, 210KB).