Medical Confidentiality: When is it OK to use your Patient Records in Research

A discussion event hosted by the Brighton and Sussex Medical School and the UK Healthcare Text Analytics Network

Do you know what’s in your medical record? Have you ever thought how information about your care and outcomes might help others? Where should we draw the lines between privacy and making use of data for better care?

Patients have contributed to research in the NHS since it began, often taking part in trials of new drugs or procedures. But increasingly medical researchers are seeing the value of using patient data for research. Patient data is the information collected and recorded by the NHS, each time someone comes in to see the doctor.

To get the most benefit from data we need to access large numbers of patient records. It is not possible to ask each patient for their permission to use their information. Given the usefulness of the data, permission is often granted by appropriate bodies on the understanding that the data is made anonymous and non-identifiable.

Some data is harder to make anonymous such as letters written between GPs and specialists, scan reports, and doctor’s notes about patients’ symptoms, and so is often not included in a data set used by researchers.

We want to know what the public thinks about medical data that is harder to make anonymous being used for research. 

Come and learn more about research using NHS patient data, and tell us what you think researchers should be allowed to do with your patient data, and why. We will have presentations from medical researchers, doctors and law specialists, as well as roundtable discussions.

Register at: Eventbrite.