News Release

Patients are willing to allow details to be used for research, but want to be consulted first

Patients’ consent preferences for research uses of information in electronic medical records: interview and survey data BMJ Volume 326, pp 373-6

Peer-Reviewed Publication

BMJ

Patients are willing to allow personal information from their medical records to be used for research purposes, but want to be actively consulted first, finds a study in this week's BMJ.

Researchers in Canada identified 123 patients from family practices in Southern Ontario. Seventeen were interviewed and 106 completed a survey about their opinions and concerns on use of information from their medical records and their preferred method of consent.

Most interviewees were willing to allow the use of their information for research purposes, although most preferred to be asked for consent, either verbally or in writing. The seeking of consent was considered an important element of respect for the individual.

Most patients made little distinction between identifiable and anonymised data, and most preferred a time limit for their consent.

Research sponsored by private insurance firms generated the greatest concern, whereas funding by foundations evoked the least concern. Sponsorship by drug companies evoked relatively low concern.

It makes sense to engage the public more generally in the use of personal information for research purposes, say the authors. One approach would be to develop an "information directive" with patients identifying in advance the purposes for which information may be used.

Obtaining individual consent for research studies presents logistical challenges that call for new approaches, taking into account the varying needs of the public and the evolving uses of personal information in a broader context, they conclude.

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