Research charities launch 'sharing data save lives campaign'

13 January 2014        

Category: BHF Comment

Doctor showing a patient a heart model

The British Heart Foundation is backing a new campaign to highlight the value of information held in our medical records.

Researchers use the data held in our records to understand diseases, improve patient care, and develop better treatments. The campaign, which is supported by many leading health charities including Cancer Research UK, the Wellcome Trust and Arthritis UK, launches today with adverts appearing in national newspapers.

It coincides with a leaflet drop by NHS England to all 22 million households in England to explain how data from health records are collected from GP surgeries. Under the changes, researchers will be able to access non-identifiable data collected from health records. Patients will be given the right to object to their data being stored within a central repository and accessed by researchers.

Locked inside our medical records is a mine of vital information that can help medical scientists make discoveries.

Patient records are an extremely valuable resource for research. The information contained within them can be used to understand the causes of disease or to detect outbreaks of infectious diseases. It can help monitoring the safety and efficacy of drugs and identify potential participants to take part in a clinical trial. The increasing use of electronic records opens up possibilities to ask new research questions by combining data from very large numbers of patients, and by linking different datasets.

Our Medical Director Professor Peter Weissberg said: “Locked inside our medical records is a mine of vital information that can help medical scientists make discoveries that can improve patient care and save lives.

“With the right safeguards in place to protect confidentiality, this new system will be of enormous benefit to patients and help reduce the burden of heart disease in the future.

“Patients can choose whether or not to share their information. That’s why it’s important to raise public awareness of the benefits access to patient records can bring so that everyone can make the right choice.”