14.01.14
Charities launch patient record-sharing awareness campaign
Patient medical records offer a “valuable resource” for research, a group of charities have highlighted as they launch a campaign to raise awareness of the benefits of sharing NHS data.
The campaign coincides with NHS England’s leaflet drop to explain the changes to patients, who are given the right to opt out if they do not wish for their records to be shared.
The charities include the Academy of Medical Sciences, Arthritis Research UK, the Association of Medical Research Charities, British Heart Foundation, Cancer Research UK, Diabetes UK, Medical Research Council, and the Wellcome Trust.
Sharing data from patient records could help to develop new medicines, monitor the safety of drugs, and identify potential participants for clinical trials. Academics and researchers from the pharmaceutical industry will be able to access non-identifiable data from records.
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.”
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.”
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For more on the sharing of patient record data, see the Jan/Feb edition of National Health Executive.