Towards a unified theory of patient data

Data on patients don’t assemble themselves. Someone collects them. The question is: who then owns the data—the people who collected the data, or the people who the data were collected from? Some years ago, researchers’ arguments that such data were theirs to release or withhold as they pleased didn’t convince me. Eventually I decided that the data belonged to research participants, and it was they who should control the data’s subsequent fate (BMJ 1996;312;1241).

Does this formulation work for medical records? Is the information record about a patient his or her property? Ownership and control of such records have recently achieved prominence because of the acceptance that soon all patients will have electronic records, just as they do electronic …