THE SUBJECTIVE EXPERIENCE OF THE RESEARCH PATIENT

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Abstract
This is a study of reactions to research as reported by 72 neurotic outpatients subjected to multiple research procedures in an ongoing drug study, including double-blind drug prescription, evaluations by several interviewers, role-playing by treating doctors, unexpected change of treating doctor after 2 interviews, completion of multiple forms, and observation and recording of interviews. Fifty-five of the 72 patients (76 percent) had no notion whatsoever that research goals were involved. Rather, they perceived the procedures as diagnostic, teaching and treatment. Patients'' primary concerns appeared to be with the treating doctor, the change of doctors and degree of improvement, rather than with research procedures. In clinical research, a focal issue for the patient remains the doctor-patient relationship. Therefore careful consideration should be given to this factor in setting up even a brief, controlled psycho-pharmacological study. Elevating a patient from the role of experimental subject to that of evaluator of aspects of a research project can help avoid ethical risks and at the same time can result in valuable information which might not have been available through multitudes of formal "tests." The data also indicate the importance of examining afresh some deeply and widely held preconceived biases concerning patient perceptions in clinical research settings.

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