Patients and families as safety experts.

from many perspectives. Lessons are sought from all manner of industries and experts, from the disciplines of psychology, ergonomics, engineering and others. Yet the one source of experience and expertise that remains largely ignored is that of the patient. In their study in this issue of CMAJ of reporting of adverse events, Daniels and colleagues show that parents of children undergoing care in hospital can provide timely and important information about the safety of care that complements information recorded in staff reporting systems. Information from fam ilies revealed many harmful and potentially harmful events that would have otherwise remained undetected. Patients can contribute to their own care at every stage of the care pathway (Box 1). Patients also carry out a great deal of “invisible work” to compensate for the failures and inefficiencies of the health care system. For instance, patients frequently provide repeat histories when notes are missing, relay information between clinicians, remind nurses of tests that should be done and chase down test results. Patients can also play an important role in reporting medical errors or adverse events that occur in their care. Patients are privileged witnesses of health care in the sense that they are at the centre of the treatment process, and, unlike individual clinical staff, they observe almost the whole process of care. Patients may not understand all of the technical and clinical issues at stake, but they do observe inconsistencies in care, errors and harms that befall themselves and others. In the case of people with chronic illnesses, they become experts not only on their own disease but on the frailties and limitations of the health care system. Previous studies of adult care have shown that patients can provide important safety information. In particular, two carefully conducted interview studies established that adult patients can report important details about errors and adverse events. In the first of these two studies, patients identified a host of process failures, such as problems with diagnosis, medication, proced ures, clinical services and service quality, during simple five-minute interviews. In a later study, Weissman and coauthors interviewed 998 recently discharged patients, comparing their reports with standard reviews of medical records to detect adverse events. The record reviews showed that 11% of patients had suffered an adverse event. However, 23% of the patients reported an adverse event that was later validated by medical review, and there was little concordance between the events detected by the two methods. The inclusion of patient reports therefore tripled the rate of detecting adverse events. Weissman and coauthors suggested that neither record reviews nor patient reports represent a gold standard, but that both are necessary to obtain a reasonably complete picture of the harm from health care. Patients and families as safety experts