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…


Powerful Patients: Highlights and Takeaways from the 2014 Personalized Medicine World Conference

Every year, scientists, doctors, and representatives from pharmaceutical, diagnostics, and technology companies gather in Silicon Valley to talk shop at the Personalized Medicine World Conference (PMWC). For 2 days, they discuss the triumphs and challenges of diagnosing and treating diseases based on patients’ distinct genetic characteristics.

This year, the PMWC status quo was interrupted by a not-so-unlikely guest: the patient. Cancer Commons joined the event’s organizers to cohost a series of informative presentations for patients and advocates, delivered by doctors and researchers, as well as patients and advocates themselves. Continue reading…