BMJ 2003;326:373 ( 15 February )

Information in practice

Patients' consent preferences for research uses of information in electronic medical records: interview and survey data

Donald J Willison, assistant professor,  Karim Keshavjee, associate member,  Kalpana Nair, research assistant,  Charlie Goldsmith, professor,  Anne M Holbrook, associate professor, 

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 willison{at}mcmaster.ca

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.

What is already known on this topic Legislation is being introduced worldwide to restrict the circumstances under which personal information may be used for secondary purposes without consent Little empirical information exists about patients' concerns over privacy and preferences for consent for use of such information for research What this study adds Patients are willing to allow personal information to be used for research purposes but want to be actively consulted first Patients make little distinction between identifiable and non-identifiable information Most patients prefer a time limit for their consent

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© 2003 BMJ Publishing Group Ltd
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Rapid Responses:

Read all Rapid Responses

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patients' views change

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Medical Research- NOT an authorised abuse of personal data

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