Data protection, informed consent, and research
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《英国医生杂志》
EDITOR—Peto et al report the result of a vote at a public meeting whose audience included the general public, patient support groups and cancer charities, doctors, nurses, and public health workers.1 All of them, except the general public, have a professional interest in medical research. As a group of medical students, we undertook an epidemiological study building on previous studies exploring patients' views about confidentiality with regard to general practice medical records.2 3 In addition, we studied public knowledge and opinion about the use of medical records for research purposes.
The study was carried out between February and April 2004 at two general practices in England (Birmingham and Blackburn). A total of 200 questionnaires were given to consecutive patients at each centre. The questionnaire was designed to elicit patients' knowledge of who is able to access their medical records, who they think should be able to, and whether they would allow access to anonymised, or patient-identifiable, data for research purposes or otherwise.
In all, 316 people approached (79%) completed the questionnaire. An overwhelming proportion of patients (250) thought that it was acceptable for their medical records to be used for research to improve health care, but only 27 (8.5%) held this view if the objective of the research was to make a profit. In asking about access to medical records, more patients thought that access should be given for research purposes than they thought was the current practice. This was consistent across all groups included in the study: doctors, practice nurses, health authorities, drug companies, etc.
Our results support Peto et al's statement that it is not true that the public no longer tolerate access to their records by bona fide medical researchers. They also suggest that the balance between research requirements and patient confidentiality should be reassessed to bring the interpretation of legislation into line with patients' views.
Jonathan Fletcher, medical student
EF184@bham.ac.uk
Joanna Marriott, medical student
Medical School, University of Birmingham, Birmingham B15 2TT
David Phillips, medical student
Medical School, University of Birmingham, Birmingham B15 2TT
Rob Dixon, Kirsten Donnelly, and Steve Hillier, all medical students at the University of Birmingham, are also authors of this letter.
Competing interests: None declared.
References
Peto J, Fletcher O, Gilham C. Data protection, informed consent, and research. BMJ 2004;328: 1029-30. (1 May.)
Carman D, Britten N. Confidentiality of medical records: the patient's perspective. Br J Gen Pract 1995;45: 485-8.
Bolton Research Group. Patients' knowledge and expectations of confidentiality in primary health care: a quantitative study. Br J Gen Pract 2000;50: 901-2.
The study was carried out between February and April 2004 at two general practices in England (Birmingham and Blackburn). A total of 200 questionnaires were given to consecutive patients at each centre. The questionnaire was designed to elicit patients' knowledge of who is able to access their medical records, who they think should be able to, and whether they would allow access to anonymised, or patient-identifiable, data for research purposes or otherwise.
In all, 316 people approached (79%) completed the questionnaire. An overwhelming proportion of patients (250) thought that it was acceptable for their medical records to be used for research to improve health care, but only 27 (8.5%) held this view if the objective of the research was to make a profit. In asking about access to medical records, more patients thought that access should be given for research purposes than they thought was the current practice. This was consistent across all groups included in the study: doctors, practice nurses, health authorities, drug companies, etc.
Our results support Peto et al's statement that it is not true that the public no longer tolerate access to their records by bona fide medical researchers. They also suggest that the balance between research requirements and patient confidentiality should be reassessed to bring the interpretation of legislation into line with patients' views.
Jonathan Fletcher, medical student
EF184@bham.ac.uk
Joanna Marriott, medical student
Medical School, University of Birmingham, Birmingham B15 2TT
David Phillips, medical student
Medical School, University of Birmingham, Birmingham B15 2TT
Rob Dixon, Kirsten Donnelly, and Steve Hillier, all medical students at the University of Birmingham, are also authors of this letter.
Competing interests: None declared.
References
Peto J, Fletcher O, Gilham C. Data protection, informed consent, and research. BMJ 2004;328: 1029-30. (1 May.)
Carman D, Britten N. Confidentiality of medical records: the patient's perspective. Br J Gen Pract 1995;45: 485-8.
Bolton Research Group. Patients' knowledge and expectations of confidentiality in primary health care: a quantitative study. Br J Gen Pract 2000;50: 901-2.