Patients' consent preferences for research uses of information in electronic medical records: interview and survey data
BMJ 2003; 326 doi: https://doi.org/10.1136/bmj.326.7385.373 (Published 15 February 2003) Cite this as: BMJ 2003;326:373- Donald J Willison, assistant professor (willison{at}mcmaster.ca),
- Karim Keshavjee, associate member,
- Kalpana Nair, research assistant,
- Charlie Goldsmith, professor,
- Anne M Holbrook, associate professor, for the COMPETE investigators
- Centre for Evaluation of Medicines, McMaster University Faculty of Health Sciences, 105 Main Street East, P1, Hamilton, ON, Canada L8N 1G6
- Correspondence to: D Willison
- Accepted 27 November 2002
Abstract
Objectives: To assess patients' preferred method of consent for the use of information from electronic medical records for research.
Design: Interviews and a structured survey of patients in practices with electronic medical records.
Setting: Family practices in southern Ontario, Canada.
Participants: 123 patients: 17 were interviewed and 106 completed a survey.
Main outcome measures: Patients' opinions and concerns on use of information from their medical records for research and their preferences for method of consent.
Results: Most interviewees were willing to allow the use of their information for research purposes, although the majority preferred that consent was sought first. The seeking of consent was considered an important element of respect for the individual. Most interviewees made little distinction between identifiable and anonymised data. Research sponsored by private insurance firms generated the greatest concern, and research sponsored by foundation the least. Sponsorship by drug companies evoked negative responses during interview and positive responses in the survey.
Conclusions: Patients are willing to allow information from their medical records to be used for research, but most prefer to be asked for consent either verbally or in writing.
Footnotes
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Funding DJW holds a career scholar award from the Canadian Institutes of Health Research and National Health Research and Development Programme. MH holds a career investigator award from the Canadian Institutes for Health Research. At the time of the study, the COMPETE project was funded jointly by Searle Canada, a research based pharmaceutical manufacturer, the Ontario Ministry of Health and Long Term Care, and the Canadian Institutes of Health Research. This study was funded by all three sources.
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Competing interests None declared.
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The questionnaire appears on bmj.com
- Accepted 27 November 2002