Patients as Partners in Learning from Unexpected Events

Importance Patient safety experts believe that patients/family members should be involved in adverse event review. However, it is unclear how aware patients/family members are about the causes of adverse events they experienced. Objective To determine whether patients/family members interviewed could identify at least one contributing factor for the event they experienced. Secondary objectives included understanding the way patients/family members became aware of adverse events, the types of contributing factors patients/family members identified for different types of adverse events, and recommendations provided by patients/family members to address the contributing factors. Design We interviewed patients/family members using semistructured interviews to understand their perceptions about why these adverse events occurred. The adverse events occurred between 1991 and 2014. Setting Participants described adverse events that occurred in various types of health care organizations (i.e., hospitals, ambulatory facilities/clinics, and dental clinics). Participants We interviewed 72 patients and family members who each described a unique adverse event. Eligibility requirements were that patients/family members spoke English or Spanish and were aware of an adverse event that happened to them or a loved one. Intervention(s) for Clinical Trials or Exposure(s) for Observational Studies N/A. Main Outcome(s) and Measure(s) The main outcome was determining whether patients/family members could identify at least one contributing factor they perceived as related to the adverse event they described. Results Each participant identified at least one contributing factor and on average identified 3.67 contributing factors for their event. The most frequently mentioned contributing factors were Staff Qualifications/Knowledge (79 percent), Safety Policies/Procedures (74 percent), and Communication (64 percent). Participants knew about the contributing factors from personal observation only (32 percent), personal reasoning (11 percent), personal research (7 percent), record review (either their own medical records or reports they received in their own investigation; 6 percent), and being told by a physician (5 percent). Finally, patients/family members were able to provide recommendations that address each of the nine contributing factors we examined. Conclusions and Relevance Patients/family members identified contributing factors related to their adverse event. Given that these contributing factors might not be known to health care organizations because most participants stated that they were not involved in the analysis process, opportunities for organizational learning from patients are potentially being missed. Health care organizations should interview patients/family about the event that harmed them to help ensure a full understanding of the causes of the event.