Personal data for public good: using health information in medical research

In 2004, the Academy launched a study to examine the current and future situation regarding the use of patient data in medical research. Medical research using patient data has had a long and successful history of providing vital knowledge on the causes of disease and the effectiveness of treatments. The Academy remains a consistent voice in debates on the use of patient records in research.

Launched

Medical research using patient data has had a long and successful history of providing vital knowledge on the causes of disease and the effectiveness of treatments. The unique features of the UK National Health Service and the advent of large patient databases present unparalleled opportunities for enhancing such research.

In October 2004, the Academy of Medical Sciences launched a study to examine the current and future situation regarding the use of patient data in medical research. It was prompted by concerns aboutunnecessary constraints on the use of patient data that included confusing legislation and professional guidance, bureaucracy of process and a lack of engagement between patients, data controllers and researchers.

The report of this study 'Personal data for public good: using health information in medical research' was published on Tuesday 17 January 2006.

A symposium was held in June 2006 bringing together senior members of the legal professsion to discuss the arguments presented in the Academy's report. Click here to download a report of this symposium.

Since the publication of our report in 2006 the Academy has been a consistent voice in debates on the use of patient records in research through our work on the regulation and governance of health research.

Following the 2006 report Professor Graham Watt FMedSci, a member of the Academy’s original working group, has participated in the development of a report to identify best practice guidance to help ensure GPs and patients have confidence in the process used to access patient information. The report was published by the Wellcome Trust in June 2009 and has since been endorsed by the British Medical Association and the Royal College of General Practitioners among others. Click here to download the report.

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