Who Owns Patient Data in Clinical Research?

A Q&A with Charlotte J. Haug, MD, PhD, MSc, International Correspondent, New England Journal of Medicine; Senior Scientist, SINTEF Techology and Society; Adjunct Affiliate, Stanford Health Policy; Oslo, Norway; charlottejohanne@gmail.com

Originally published October 25, 2017

Q: Many people are coming to believe that active patient participation will be a key to more rapid movement forward in cancer research. Data sharing can help. But who owns the data? And what rights and responsibilities are thus conferred? Your recent NEJM article provides helpful background. Can you help us better understand?

A: Exchange of data between patients and doctors is essential for the practice of medicine – and patient data are essential for medical research and progress.

Traditionally, doctors collected patients’ health information (typically the medical history, laboratory tests, drugs prescribed, outcome of treatment, etc.) and sometimes shared that information, in confidence, with colleagues to seek advice and advance science. The medical record was the physician’s property, and still is in many countries and legislations. But do physicians own the patient data? Continue reading…


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“Millions of patient records with details about individual cancer treatments have been compiled into a single database for the first time in a bid to help doctors save lives. The new database will form the biggest cancer registration service in the world and will give cancer specialists across the country instant access to detailed clinical data, helping them to make informed decisions on how to treat patients.”


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“Millions of patient records with details about individual cancer treatments have been compiled into a single database for the first time in a bid to help doctors save lives. The new database will form the biggest cancer registration service in the world and will give cancer specialists across the country instant access to detailed clinical data, helping them to make informed decisions on how to treat patients.”