In this study of patients treated in US acute care hospitals, virtually all respondents participated in their care during hospitalization in ways that might promote patient safety. Patients reported that they were aware of the reason for their admission, felt well enough to communicate with caregivers, found a clinician who could provide information, discussed the advantages and disadvantages of treatment options, and participated in decisions about their care. Fewer respondents reported the most ‘active’ participation activities, such as checking to make sure that their medications were correct. Those with greater participation were more likely to report high quality of care and, importantly, were less likely to experience adverse events.
The inverse association between participation and adverse events supports the theory that participatory patients observed, identified and communicated potential problems before they resulted in medical injuries. This association was demonstrated consistently for the more passive forms of participation, and persisted for analyses of serious and preventable adverse events. This suggests that safety is a product of the interaction between patients and families on the one hand, and providers and their hospitals on the other. Safety-oriented health-care organizations may create conditions that facilitate patients' access to their providers, ready provision of information and participatory decision-making. Patient participation and involvement is a nuanced concept, encompassing efforts and contributions of patients and their caregivers, their respective views and feelings, and their relationships with one another [33
More active forms of participation, such as having a visitor advocate for the patient or a patient check his or her own medications, were not protective, perhaps because there were fewer opportunities to perform these functions or to perform them consistently enough to defend against occasional lapses of care [25
]. Patients' willingness to perform certain tasks (e.g. asking providers if they washed their hands) depends on the perceived risk, level of confrontation required, patients' self-efficacy and perceived degree of control and effectiveness [10
]. Active participation measures may be mismatched with types of adverse events that hospitalized patients' experience. Drug checking would be unlikely to prevent procedure-related errors and post-operative infections. Conversely, a patient may more readily identify errors involving drugs they take routinely at home, compared with medications that are newly prescribed in the hospital.
The impact of patient participation on patient safety is complex and methodologically challenging. We believe the dominant effect links patient participation with heightened vigilance and effective communication with the care team, resulting in the identification of adverse events and interception of clinical lapses before adverse events occur. However, the experience of a serious adverse event could decrease a patient's capacity to participate as a consequence of the injury. On the other hand, observation of a medical error or an adverse event could increase patients' vigilance, increasing the probability of identifying adverse events, and potentially confounding the protective effect of participation. The final result will be a combination of these effects.
Our study suggests that patient-oriented patient safety initiatives are feasible among hospital inpatients, since patient participation activities were widespread even among this vulnerable population. A variety of models for promoting patients' self-protective behaviors have been proposed, including educational initiatives, patient-initiated incident reports and patient-activated rapid response teams [38
]. However, given the beneficial effect of passive forms of participation, organizations should consider focusing their efforts on simple measures such as making it easier for patients to find a doctor or nurse, encouraging staff to address patients' questions and facilitating participatory decision-making.
This study has several limitations. First, patients who died during their hospitalization or before the surveys were administered were not included. If these patients were less able to participate in their care, our results overestimate the extent of participation among inpatients. Second, older and sicker patients may be less likely to report adverse events or to participate in their care. If these patients experience more adverse events, then their under-reporting would result in an underestimate of the observed association between participation and adverse events. Third, less than half of the cohort we surveyed authorized medical record review. It is possible that non-response bias affected ascertainment of adverse events or participation, as we found a small difference in the mean participation level of those who did and did not authorize medical record review (5.56 vs. 5.38, P= 0.002). Fourth, patients were surveyed 6–12 months after discharge, due to administrative delays, which may have contributed to possible recall bias. Social desirability bias may also be present, in which patients assumed that more participation was better, potentially overestimating their level of participation. Fifth, our study did not investigate hospital or provider attributes that may promote patient participation, potentially confounding the relationship between patient participation, quality and safety. Finally, ascertainment of adverse events was limited by the data available by patient survey and in the medical record. Physician reviewers used their best judgment about the plausibility of the evidence in making these judgments, but patient reports may be inaccurate and chart review methods likely underestimate the prevalence of adverse events. Nevertheless, we used standard methods for making these judgments.
In summary, our study provides evidence of the capacity of hospital inpatients to participate in their care in a variety of ways that are associated with enhanced perceptions of quality and reduced adverse events. Additional research is required to understand what interventions offer the most promise for encouraging participation and preventing adverse events. Organizations cannot shift the burden of responsibility for safe care to patients and families [41
], but they can create an environment where patients and their families serve as an additional and often unaccounted source of strength and resilience.