use of mdcal information for -: M~Research Cbuncil statement

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The British Medical Research Council has recently published a statement entitled Responsibility in the Use of Medical Information for Research’*. It considered the ethical problems arising from the collection of private information about patients, and its use and perusal by research workers. Noting the change resulting from the patient being treated by one single doctor in the past, to the present communication of the case histories to reseamh teams, it pointed out the value of epidemi- ological studies in relation to toxic hazards of food additives, combustion of fuels, and environmental pollution.

Case histories are indispemable in these studies, and the derivation of correlations requires their examination by other workers with whom the patient has no direct professional relationship. The medical records may be scrutinized, or fed into a computer, but this does not a&t the ethical position.

The Medical Research Council proposed that such information should continue to be accessible without explicit consent of the patient, if, and only 8, the following conditions are observed: the confidential information must be used in the interests of the health of the community; non-medically qualif?ed research workers should be responsible for this information to doctors whose conduct is regulated by the General Medical Council, or-if there is no doctor associated-after consultation with a new Standing Committee to be set up by the Medical Research Council.

Access to records by researck workers

Information from patients’ medical records needed by research workers should only be sought through their medical attendants. It was not always necessary or desirable that patients’ consent be obtained for epidemiological surveys as they might be alarmed by a hypothesis, which had engendered a survey, but which might not be demonstrated by its results.

chstody ofrecorb

The report further proposes that the responsibility for the custody of records should be in the hands of the director of the team, and that persons using them should give a written undertaking to maintain their confidentiality. The medical records should be stored appropriately, or ‘scrambled’ if in computers. In the use of information,

* Bd. Mid. 3. (1973) (i), 213-216.

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the patients’ interests should be paramount. Those who collect and store data should consider at intervals when these could be destroyed.

standing committee An Appendix to the Report sets up the terms of reference of the new Standing Com- mittee on confidential medical data in the light of its recommendations. The Com- mittee would give advice and grants in relation to the use and access to confidential medical data.

case histories not used for research

The Medical Research Council’s statement is an important document, but it is limited in that it considered only the confidentiality of records in relation to medical research. It was clearly largely biassed towards the use of such documents in epidemi- ology. However, the mileage of documents used for medical research is but a very small proportion of the total number of medical records containing private informa- tion about patients. When a patient goes to hospital, the information is liable to be seen by at least the following personnel: the general practitioner, his secretary, his nurse; the admissions officer, his secretary, the casualty sister, the casualty nurse; the ward sister, the ward nurses, two house oflicers, the consultant, his secretary; it may also be seen by an anaesthetist, a chaplain, a physiotherapist, a social worker and students. This formidable list is not ezhaustive, but it is easy to see that each of the personnel involved has different degrees of responsibility in relation to confidentiality.

Any of these persons has access to information not only of an obviously con6dential nature, like, if a patient has syphilis or tuberculosis, but much other information. For ezample, the patient’s age, marital status, psychological relationships with his family, or number of miscarriages, are all aspects of one’s personality that one is entitled to regard as private.

Unwitting diSadon ofidornaation

Information is also dissipated obviously unwittingly, when one patient’s case is discussed on the telephone in the presence of another, when cubicles in casualty departments are separated only by curtains, when the case history of a partially deaf person is being taken in an open ward, and in many other situations. All these are examples of everyday occurrences in large hospitals, but ones which patients have to tolerate. They do not like to complain as it would seem ungracious and inappropriate in situations where their lives may be at stake.

Rights of a patient durhsg exaxdnadon

A patient under examination and treatment is virtually without civil rights. The doctor tells him to take off his clothes; the doctor injects him; the doctor handles him physically. Perhaps normally sensitive patients regard this as reasonable, but there are other indignities to come: rectal and vaginal digital examinations, proctoscopy and sigmoidoscopy, passing of Ryle’s tubes, shaving the pubic hair, provision of a bottle for micturition, catheterization etc. etc. Again, no sensible patient would complain as all these manoeuvres are carried out in his greater interest. Nevertheless,

EDITORIAL 7

it behoves doctors, other medical staff, and research workers, especially those with many years’ experience, to bear in mind continuously that patients are being subjected to invasion of their personal privacy, assault of their bodies and serious injury to their dignity, whenever they go into hospital. Their acceptance of the necessity of these indignities only slightly immures them to the psychological humiliation that they feel.

Practical atitudes

In practical terms, this means that the price of the patient’s liberty is the eternal vigilance of the doctor. We must be asking ourselves continuously: ‘Are these patients’ secrets properly guarded ? Are we talking too loudly about X in front of Y? Can we ensure the minimum humiliation of the patient during endoscopy ? Have I done my best to guard the patients’ dignity ?’ Surely, that is what the Hippocratic Oath and the doctor-patient relationship is really all about.