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EDITOR
Willison et el report that most patients would
prefer the opportunity to provide consent before anonymised information
from their electronic medical records was used for research.1
They point out there are major logistical challenges to obtaining
such informed consent, especially in primary care, where ethical
concerns prohibit researchers from contacting patients directly.2
Gaining informed consent from each individual in a research study including thousands of patients may fall to general practitioners and practice staff, who already have a heavy workload. The additional resource and financial costs would be considerable. General practitioners are unlikely to agree to do this. Thus primary care research using anonymised electronic data may grind to a halt and one of the advantages of electronic patient records may be lost.
Another difficulty is giving people all the relevant information about a complex issue. The participants in the study seem not to have been given information about the costs of obtaining their consent or the possible consequence of the research being discontinued. Would their responses have been the same if they had been aware of the wider implications? Many patients may not want time and resources to be spent in this way and may also agree with the duty of social responsibility.3 Individual informed consent might sometimes be inappropriate.3
In New Zealand patients are assumed to have given consent if they are registered with practices affiliated with the computer research network of the Royal New Zealand College of General Practitioners.4 These practices put notices in their offices, stating that information from a patient's consultation, investigation, or referral may be used for research once it is stripped of identifying data.
Other solutions are needed that respect patient autonomy without stifling
primary care research. Finding ways of improving public knowledge
about the research process when using anonymised data is also
required.
Ruth G Jepson
ruth.jepson@ed.ac.uk
Roma Robertson
Department of General Practice, University of Edinburgh, Edinburgh EH8 9DX
Competing interests: None declared.
| 1. | Willison DJ, Keshavjee K, Nair K, Goldsmith C,
Holbrook AM. Patients' consent preferences for research uses of
information in electronic medical records: interview and survey
data. BMJ 2003; 326: 373 |
| 2. | Rogers WA, Schwartz L. Supporting ethical practice in primary care research: strategies for action. Br J Gen Pract 2002; 52: 1007-1011[ISI][Medline]. |
| 3. | Cassell J, Young A. Why we should not seek
individual informed consent for participation in health services
research. J Med Ethics 2002; 28: 313-317 |
| 4. | Dovey SM, Tilyard MW. The computer research network of the Royal New Zealand College of General Practitioners: an approach to general practice research in New Zealand. Br J Gen Pract 1996; 46: 749-752[ISI][Medline]. |
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© 2003 BMJ Publishing Group Ltd
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