New guidelines that allow researchers to use data that could result in better treatments while safeguarding patient confidentiality have been published by the Association of the British Pharmaceutical Industry (ABPI).
Medical data, including information from clinical trials gathered during the course of developing a medicine, may be a valuable source of information in work carried out to invent other future medicines. New, previously unconsidered uses of a medicine might also come to light as a result of a fresh look at the data.
At the same time, patients rightly want their privacy respected and pharmaceutical companies are keenly aware of the need to protect personal data. The ABPI guidelines draw together best practice to set an effective standard which safeguards the legal and ethical needs of the community.
“Secondary use of data by medical researchers can bring many benefits for patients including discovery of new therapeutic uses of existing medicines and quicker medicines development.” said ABPI Legal Director, Carol Wilson.
“But patients need to be assured information about them is being used responsibly, securely and ethically. These guidelines aim to balance these considerations and promote trust by ensuring researchers adopt the best practice in handling personal information.”
“People have always considered information about their health to be particularly private. They want it to be kept secure and only used for proper purposes. However, in order to develop new medicines researchers need access to information about people,” said Information Commissioner, Richard Thomas.
“Data protection law provides an effective framework for managing the tension between privacy and access to information. This guidance will help medical researchers to make the best use of personal information whilst respecting the people it is about. Its emphasis on consent and transparency is particularly welcome.”
Note to editors:
Download the ABPI Guidelines for the Secondary Use of Data for Medical Research Purposes (PDF, 209KB)
For further information, please contact: ABPI Press Office 020 7747 1410