Leading charities launch campaign to highlight importance of patient records for medical research
13 January 2014
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
- 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