The campaign launches on Monday 13 January 2014 with a series of advertisements in the national media. It is supported by:
- Academy of Medical Sciences
- Arthritis Research UK
- Association of Medical Research Charities
- British Heart Foundation
- Cancer Research UK
- Diabetes UK
- Medical Research Council
- Wellcome Trust
Professor Sir John Tooke PMedSci, President, Academy of Medical Sciences
"Patient records provide data that can be used to understand the causes of disease, to investigate the safety and effectiveness of drugs, treatments and interventions, and to improve healthcare services. However, for this research to be carried out researchers need access to large, representative samples of accurate population data.
"For the majority of medical research projects the risk of disclosure of sensitive information is extremely low. On the other hand, the risks to public health of impeding such research are potentially very large. It is therefore essential to communicate clearly exactly how and why patient data is used, how it will be stored, and how everyone can make an informed decision about exactly how their data is used."
Dr Liam O'Toole, Chief Executive, Arthritis Research UK
"Health data can help us understand and improve the quality of care for millions of people who are living with the agonising pain and disability caused by arthritis. Research driven by health records can help us all understand which treatments work best for people with arthritis and drive improvements in patient care."
Professor Peter Weissberg, Medical Director, British Heart Foundation
"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."
Dr Harpal Kumar, Chief Executive, Cancer Research UK
"Advances in medical research rely on access to the records of patients. The UK is in a unique position in this area because it has more comprehensive data than anywhere else in the world. Much of the progress we've made in understanding cancer is based on analysing patient records - helping us understand the causes of the disease and increasing our knowledge of how to prevent it, as well as finding new ways to diagnose cancer earlier when treatment is more likely to be successful. All of this work is - and as we understand it, will continue to be - carried out under strict regulations and ethical guidelines."
Bridget Turner, Director for Policy and Care Improvement, Diabetes UK
"We hope that this campaign serves to make the case for the huge benefit this change could bring, which will include improving the lives of people with diabetes and at risk of developing it. Clearly, there is much to be gained from this and we are pleased that the rules now allow researchers in academia and the pharmaceutical industry to access non-identifiable data collected from health records. We also want to make sure that people understand what these changes mean so they are in a position to make an informed choice about whether they wish to opt out."