Leading charities launch campaign to highlight importance of patient records for medical research

Our medical records hold valuable information that could help save and improve lives, say leading medical research organisations today. By allowing researchers access to the information contained within our records, we can contribute towards understanding the causes of disease, developing new and better medicines, and identifying new outbreaks of infection.

Leading medical research organisations, including Arthritis Research UK, Cancer Research UK, Diabetes UK, the British Heart Foundation and the Wellcome Trust, have today launched an advertising campaign to raise awareness of the importance of sharing data from patient records with researchers. The campaign coincides with a leaflet drop by NHS England to all 22 million English households to explain changes in how data from our health records is collected from GP surgeries.

Under the changes, researchers in academia and the pharmaceutical industry will be able to access non-identifiable data collected from health records. Patients will be given the right to opt out from having their data stored within a central repository and accessed by researchers.

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 in monitoring the safety and efficacy of drugs and in identifying potential participants to take part in a clinical trial. The information can also be used to study the effectiveness of treatments and interventions in situations in which conducting a clinical trial is not possible, for example monitoring the safety of taking prescription medication during pregnancy. 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.

In the 1950s, health data played a major part in uncovering the link between smoking and lung cancer. More recently, the health data of children with autism born since 1979 in eight UK health districts helped scientists establish that there is no link between the measles, mumps and rubella (MMR) vaccination and autism.

Dr Jeremy Farrar, Director of the Wellcome Trust, says: "The NHS is a unique and incredibly valuable resource for research, providing insights that just would not be possible without such large and comprehensive sets of data. With the correct and necessary safeguards in place to assure public confidence, our patient records will provide a rich source of important data that can help researchers develop much-needed treatments and interventions that can improve and even save people’s lives."

Sharmila Nebhrajani, Chief Executive of the Association of Medical Research Charities, says: "Under the new system introduced through the NHS, people can choose whether to allow the use of their health data in research. I believe people will be willing to make the public-spirited act of sharing their medical records with researchers as long as they are confident that their data will be treated with care to protect their identity, competence so that leaks and mistakes will not occur, and used only with their consent, allowing those who do not wish to take part to opt out. And from this sharing, researchers can find new knowledge, insights and treatments that will benefit us all."

Richard Stephens, who has survived both Hodgkin's lymphoma and basal cell carcinoma, says: "As someone who has survived two cancers, I have seen first-hand how our health records can help improve people's lives. I might not be alive today if researchers had not been able to access the data in the health records of other cancer patients to produce the most effective treatments and the best care for me, and by making my own records available to researchers I know I am helping other patients in the future."

Further information about how sharing data saves lives can be found at patientrecords.org.uk

Notes for editors

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

Additional comments:

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."