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Sharing your patient record can help researchers save and improve lives

The Society for Endocrinology is supporting a new campaign to raise awareness about the importance of sharing data from patient records with researchers. By allowing researchers access to the information contained within our records, we can contribute towards understanding the causes of disease and develop new and better medicines. Access to health data has played a major role in the Society's own project, such as the UK Acromegaly Register. This project, initially set up in 1997, collects prospective and retrospective data on patients with acromegaly to assess outcomes of surgery, radiotherapy and medical therapy. The data is disseminated in peer-reviewed journals, at conferences and fed back to patient support groups. The campaign, run by NHS England, is supported by medical research organisations including Cancer Research UK, Diabetes UK and the Wellcome Trust will include a leaflet drop to all 22 million households in England to explain changes in collecting data from health records from GP surgeries. Under these changes, researchers in academia and the pharmaceutical industry will have greater access to non-identifiable data collected from health records. Data security is of paramount importance and all patients will have the right to choose how their records are shared under the new system. Further information about how sharing data save lives can be found here.
Source: Society for Endocrinology - Category: Endocrinology Source Type: news

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