Patients' consent preferences for research uses of information in electronic medical records: interview and survey data.
OBJECTIVE
To assess patients' preferred method of consent for the use of information from electronic medical records for research.


METHODS
Interviews and a structured survey of patients in practices with electronic medical records.


METHODS
Family practices in southern Ontario, Canada.


METHODS
123 patients: 17 were interviewed and 106 completed a survey.


METHODS
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.
Willison
Donald J
DJ
Centre for Evaluation of Medicines, McMaster University Faculty of Health Sciences, 105 Main Street East, P1, Hamilton, ON, Canada L8N 1G6. willison@mcmaster.ca
Keshavjee
Karim
K
Nair
Kalpana
K
Goldsmith
Charlie
C
Holbrook
Anne M
AM
D022126:Access to Information; D030881:Disclosure; D005260:Female; D019538:Health Care Surveys; D006801:Humans; D007258:Informed Consent; D008297:Male; D016347:Medical Records Systems, Computerized; D009864:Ontario; D017060:Patient Satisfaction; D012106:Research