SYMPOSIUM: HEALTH EXPERIENCES RESEARCH, ENGAGEMENT, AND DECISION MAKING

Monday, October 24, 2016: 11:15 AM - 12:30 PM
Bayshore Ballroom Salon D, Lobby Level (Westin Bayshore Vancouver)

A systematic review on engagement in research, conducted for the Patient-Centered Outcomes Research Institute, noted that patient engagement in healthcare research “comes at a cost and can become tokenistic.” In this symposium, we describe how health experiences research can address this problem by bringing the “widest possible range” of experiences of a condition or service to the table, enhancing the generalizability of stakeholder perspectives. Health Experiences Research can amplify the voice of patients and caregivers and by bringing in voices that wouldn’t otherwise be heard, for example from patients and caregivers who are not comfortable with participating in advisory committees, town halls, and other commonly used venues for engagement.  

Health experience research also complements surveys as a means to identify problems and solutions in delivering health services, and a repository of health experience research can inform patients, caregivers, and others and aid in the development of quality improvement programs, practice guidelines, research agendas, patient-reported outcomes, and curriculum for health professional education.  The symposium will feature the approach of HealthTalk.org from the United Kingdom as well.

Panelists:

Sara J. Knight, PhD
University of Alabama at Birmingham

Susan Law, PhD
St. Mary's Research Centre & McGill University
Principal Scientist and Associate Professor

Susan Law is a Principal Scientist at St. Mary’s Research Centre in Montreal and Associate Professor at McGill University in the Department of Family Medicine. She has a Master’s in Health Administration from the University of Toronto and PhD from the London School of Hygiene and Tropical Medicine, UK. Her research spans health services research, patient engagement, personal experiences of illness, and knowledge translation. She leads Health Experiences Research Canada - a McGill-St. Mary’s team that is part of an international collaboration with 10 countries involved in collecting and sharing people’s health experiences. The first two modules are complete on family caregiving and women’s experiences of breast cancer; pilot projects on immigrant mental health, perinatal mental health and end of life are in progress. She is working with the McGill Centre for Medical Education to design teaching modules for interprofessional education to enhance the diversity of patient voices in the classroom.

Nancy Pandhi, MD, MPH, PhD
University of Wisconsin-Madison Department of Family Medicine and Community Health
Assistant Professor

Katherine Clegg Smith, PhD
Johns Hopkins Bloomberg School of Public Health
Professor

Dr. Katherine Clegg Smith is a Professor in the department of Health, Behavior and Society in the Johns Hopkins Bloomberg School of Public Health. Dr. Smith is a medical sociologist whose research and teaching focuses on how people come to understand their own health and health-related experiences. Her area of expertise is communication of health information. and she also has a general interest in identity and its relationship to health. Professor Smith directs the Johns Hopkins Center for Qualitative Studies in Health and Medicine, and she was an author of the NIH Report of Best Practices in Mixed Methods Research for the Health Sciences. She has a number of ongoing studies in which she is exploring quality of life and care coordination for cancer survivors. Professor Smith’s other area of research is tobacco control. She is the principal investigator of the TPackSS study, a surveillance system of tobacco packaging in 14 low and middle income countries.

Moderator:

Mark Helfand, MD, MPH
Portland VA Medical Center and Oregon Health & Science University
SMDM President, Staff Physician and Professor of Medicine

See more of: 38th Annual North American Meeting of the Society for Medical Decision Making
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