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Leading medical research charities launch 'Sharing data save lives' campaign

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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 diseases and conditions such as diabetes, developing new and better medicines and identifying new outbreaks of infection.

Sharing data with researchers

Leading medical research organisations including Diabetes UK, Arthritis Research UK, Cancer Research 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. Their campaign coincides with a leaflet drop by NHS England to all 22 million households in England to explain changes in how data from our health records is collected from GP surgeries.

Non-identifiable data

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 object to their data being stored within a central repository and accessed by researchers.

Extremely valuable resource

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 information can also be used to study the effectiveness of treatments and interventions in situations where it is not possible to conduct a clinical trial, 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, Rubella (MMR) vaccination and autism.

"Much to be gained"

Bridget Turner, Director for Policy and Care Improvement for Diabetes UK, said, "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 not 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."

"Rich source of data"

Dr Jeremy Farrar, Director of the Wellcome Trust, said, "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."

"New knowledge, insights and treatments"

Sharmila Nebhrajani, Chief Executive of the Association of Medical Research Charities, said, "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."

"I might not be alive today"

Richard Stephens, who has survived both Hodgkins Lymphoma and basal cell carcinoma, said, "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 save lives can be found atwww.patientrecords.org.uk.

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