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‘Sharing data saves lives’ say charities and researchers

Patients encouraged to share medical data

Jo Carlowe

Monday, 13 January 2014

Medical research charities and major research organisations have today joined forces to launch the ‘sharing data saves lives’ campaign.

Some 42 members of the Association of Medical Research Charities (AMRC) together with research organisations including the Medical Research Council, the Wellcome Trust and the Academy of Medical Sciences, joined together to launch a publicity campaign to encourage people to share their medical data for research purposes.

Ads will be appearing online and in national print media over the next week, telling people how information from their patient records can be used by researchers to improve care and save lives. In addition, the publicity drive will include information about the safeguards in place to protect confidentiality.

The AMRC campaign coincides with a leaflet drop by NHS England to all 22 million households in England to explain changes in how data from 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 object to their data being stored within a central repository and accessed by researchers.

Sharmila Nebhrajani, chief executive of AMRC said: "We know the public are strong supporters of the cause of medical research. In a recent MORI survey 80% were happy for researchers to have access to their data to help conduct research that might save lives. Donating our most personal data is a gift just like donating blood or an organ. And it is a gift that must be reciprocated by an NHS system of strong and effective controls that ensure our data are treated with respect and used only with our consent.”

From the discovery that smoking caused lung cancer in the 1950s to the debunking of the supposed link between MMR vaccination and autism in the 1980s, data from medical records have been a rich source of scientific and medical insight, notes the AMRC.

Commenting on the campaign, Dr Doug Brown, director of research and development at the Alzheimer’s Society, said sharing data for research purposes could help advance dementia treatment.

“The data contained within patient records is a powerful research resource, which if used responsibly and safely with proper assurances, could help us make huge progress in our search for a cure for dementia. With 800,000 people living with dementia in the UK, and that number set to exceed 1 million by 2021, we support the use of every available tool to help speed up advancements in research for the benefit of people living with dementia.”

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