Bell Sigall K, Etchegaray Jason M, Gaufberg Elizabeth, Lowe Elizabeth, Ottosen Madelene J, Sands Kenneth E, Lee Barbara Sarnoff, Thomas Eric J, Van Niel Melinda, Kenney Linda
Jt Comm J Qual Patient Saf. 2018 Jul;44(7):424-435. doi: 10.1016/j.jcjq.2018.03.007. Epub 2018 May 30.
The nature and consequences of patient and family emotional harm stemming from preventable medical error, such as losing a loved one or surviving serious medical injury, is poorly understood. Patients and families, clinicians, social scientists, lawyers, and foundation/policy leaders were brought together to establish research priorities for this issue.
A one-day conference of diverse stakeholder groups to establish a consensus-driven research agenda focused on (1) priorities for research on the short-term and long-term emotional impact of harmful events on patients and families, (2) barriers and enablers to conducting such research, and (3) actionable steps toward better supporting harmed patients and families now.
Stakeholders discussed patient and family experiences after serious harmful events, including profound isolation, psychological distress, damaging aspects of medical culture, health care aversion, and negative effects on communities. Stakeholder groups reached consensus, defining four research priorities: (1) Establish conceptual framework and patient-centered taxonomy of harm and healing; (2) Describe epidemiology of emotional harm; (3) Determine how to make emotional harm and long-term impacts visible to health care organizations and society at large; and (4) Develop and implement best practices for emotional support of patients and families. The group also created a strategy for overcoming research barriers and actionable "Do Now" approaches to improve the patient and family experience while research is ongoing.
Emotional and other long-term impacts of harmful events can have profound consequences for patients and families. Stakeholders designed a path forward to inform approaches that better support harmed patients and families, with both immediately actionable and longer-term research strategies.
可预防的医疗差错给患者及其家属带来的情感伤害的性质和后果，如失去亲人或在严重医疗伤害中幸存，目前还知之甚少。患者及其家属、临床医生、社会科学家、律师以及基金会/政策领导人齐聚一堂，为该问题确定研究重点。
召开了为期一天的会议，参会人员来自不同利益相关者群体，目的是建立一个以共识为驱动的研究议程，重点关注：（1）有害事件对患者及其家属短期和长期情感影响的研究重点；（2）开展此类研究的障碍和促进因素；（3）目前更好地支持受伤害患者及其家属的可采取行动的步骤。
利益相关者讨论了严重有害事件后患者及其家属的经历，包括深刻的孤立感、心理困扰、医疗文化的有害方面、对医疗保健的反感以及对社区的负面影响。利益相关者群体达成了共识，确定了四个研究重点：（1）建立伤害与康复的概念框架和以患者为中心的分类法；（2）描述情感伤害的流行病学；（3）确定如何让医疗保健机构和整个社会了解情感伤害及其长期影响；（4）制定并实施对患者及其家属进行情感支持的最佳实践。该小组还制定了克服研究障碍的策略以及在研究进行期间改善患者及其家属体验的可立即采取行动的“现在就做”方法。
有害事件的情感及其他长期影响可能会给患者及其家属带来深远后果。利益相关者设计了一条前进道路，为更好地支持受伤害患者及其家属的方法提供信息，既有可立即采取行动的策略，也有长期研究策略。
