Participants in AHRQ-Funded Conference Discuss Research Agenda To Support Patients and Families After Harmful Health Care Events

Patients and families would benefit from a research agenda and immediate strategies to address the emotional and psychological impact of health care-associated harm, according to participants at an AHRQ-funded conference. The group devised a four-part research agenda consisting of: establishing a conceptual framework and patient-centered taxonomy of harm and healing; describing the epidemiology of emotional harm; determining how to make emotional harm and long-term impacts visible to health care organizations and society; and developing and implementing best practices for emotional support of patients and families. Proceedings of the conference were published in The Joint Commission Journal on Quality and Patient Safety. Access the abstract.

A Multi-Stakeholder Consensus-Driven Research Agenda for Better Understanding and Supporting the Emotional Impact of Harmful Events on Patients and Families☆

Sigall K. Bell, MD (is Director of Patient Safety and Discovery, OpenNotes, Beth Israel Deaconess Medical Center, Boston, and Associate Professor of Medicine, Harvard Medical School, Boston.)

Jason M. Etchegaray, PhD (is Senior Behavioral and Social Scientist, RAND Corporation, Santa Monica, California.)

Elizabeth Gaufberg, MD, MPH (is Director of the Arnold P. Gold Foundation Research Institute, and Associate Professor of Medicine and Psychiatry, Harvard Medical School, Boston.)

Elizabeth Lowe (is a Patient and Family Advisory Council Member, Beth Israel Deaconess Medical Center.)

Madelene J. Ottosen, PhD, RN (is Assistant Professor, University of Texas (UT)–Memorial Hermann Center for Healthcare Quality and Safety, McGovern Medical School; and Department of Family Health, Cizik School of Nursing, UT Health Science Center at Houston.)

Kenneth E. Sands, MD, MPH (is Chief Epidemiologist and Chief Patient Safety Officer, HCA Healthcare, Nashville, Tennessee.)

Barbara Sarnoff Lee, MSSW (is Director of Patient Engagement, Department of Social Work and Patient/Family Engagement, Beth Israel Deaconess Medical Center.)

Eric J. Thomas, MD, MPH (is Director, and Associate Dean for Healthcare Quality, UT Houston–Memorial Hermann Center for Healthcare Quality and Safety.)

Melinda Van Niel, MBA, CPHRM (is Project Manager, Department of Health Care Quality, Beth Israel Deaconess Medical Center.)

Correspondence information about the author MBA, CPHRM Melinda Van Niel

Linda Kenney (is Executive Director, Medically Induced Trauma Support Services, Boston. Please address correspondence to Sigall K. Bell, xxxxxx)

DOI: https://doi.org/10.1016/j.jcjq.2018.03.007

Article Info

Abstract

Background

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.

Methods

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.

Results

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.

Conclusion

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.