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Effective Health Care Program

Eliciting Patients’ Values and Preferences in Decision Making (Session II)

White Paper

This conference took place on September 13, 2011, in Gaithersburg, Maryland. Presenters and discussants explored the theory-based and practical approaches to patient-provider communication in order to offer the EHC Program guidance on developing resources and tools that support decisionmaking by patients and their health care providers.

This second session addresses eliciting patients' values and preferences in decision making.

Presentations

Eliciting Patients’ Values and Preferences in Decision Making

Hilary Llewellyn-Thomas, Ph.D., Presenter


Dartmouth Medical School, Hanover, New Hampshire

Quantifying Patient Preferences

Liana Fraenkel, M.D., M.P.H., Presenter


Yale School of Medicine, New Haven, Connecticut

What is Shared in Shared Decisionmaking? Eliciting and Constructing Patients’ Preferences When the Evidence is Unclear

Ronald M. Epstein, M.D., Presenter


University of Rochester, Rochester, New York

Discussant Presentation

Paul M. Haidet, M.D., M.P.H., Discussant


Penn State College of Medicine, Hershey, Pennsylvania

Discussant Presentation

Dominick L. Frosch, Ph.D., Discussant


University of California, Los Angeles, Los Angeles, California

Biosketches

Ronald M. Epstein M.D., is Professor of Family Medicine, Psychiatry, Oncology and Nursing at the University of Rochester Medical Center, where he directs the Center for Communication and Disparities Research and the Deans Teaching Fellows Program. His federally-funded research on improving patient-physician communication focuses on marginalized populations, stigmatized conditions such as depression and HIV, and, more recently end-of-life care. He has developed innovative educational programs in mindful practice, communication skills, physician self-awareness and assessment of professional competence, including peer assessment. He has over 160 peer-reviewed publications. He has published influential papers outlining habits of mind of master clinicians (Mindful Practice, JAMA 1999), assessing professional competence (JAMA 2002, NEJM 2007), and the effects of a mindful communication program on physician empathy, burnout and clinical care (JAMA 2009).

Dr. Epstein graduated from Wesleyan University and Harvard Medical School. Honors include the George Engel and John Romano Dean’s Teaching Scholar at the University of Rochester, and the Lynn Payer Award from the American Academy on Communication in Healthcare, a Fulbright scholarship at the Institute for Health Studies in Barcelona and a visiting scholarship at the University of Sydney.

Liana Fraenkel M.D., M.P.H., is Associate Professor of Medicine in the Section of Rheumatology and Associate Program Director for the Investigative Rheumatology Fellowship at the Yale School of Medicine and Chief of Rheumatology at the VA Connecticut Healthcare System. Dr. Fraenkel’s research interests lie in applying scientifically rigorous approaches to better understand and improve both patient and physician decision making. This topic has been the focus of her career development awards and investigator-initiated project grants since 1998. Her efforts resulted in a series of papers describing the use and value of conjoint analysis to ascertain patient treatment preferences across a range of sociodemographic groups and diseases, and customization of the original software program to improve use with patients.

In addition to developing conjoint analysis into a method to facilitate construction of patients’ preferences, Dr. Fraenkel’s work has led to new insights into decision making which have important clinical implications. For example, using conjoint analysis, she has demonstrated that rheumatoid arthritis patient preferences for more aggressive treatment with disease modifying antirheumatic drugs differ by race, with Black patients preferring less aggressive treatment compared to White patients with similar disease severity. These results may help explain the disparity in utilization of newer riskier drugs in minority patients. In collaboration with investigators in the Netherlands, her most recent work using a version of Best Worse Scaling has found that patients’ and rheumatologists’ decisions to escalate care in rheumatoid arthritis (when clinically indicated) are influenced by different factors. This finding suggests that improved communication between patients and their physicians might increase the number of arthritis patients receiving treatment concordant with published guidelines. Dr. Fraenkel is currently working on developing web-based decision support tools, based on Fuzzy Trace theory, for patients facing decisions involving medications with significant risks of toxicity.

Dominick L. Frosch, Ph.D., is Associate Staff Scientist at the Palo Alto Medical Foundation and Assistant Professor of Medicine at the University of California, Los Angeles. Dr. Frosch completed his PhD in clinical health psychology at the University of California, San Diego and a fellowship as a Robert Wood Johnson Health & Society Scholar at the University of Pennsylvania. For the past 12 years his research has focused on developing, evaluating and implementing patient decision support interventions. He has served as PI for three randomized controlled trials of decision support interventions (DESIs) for prostate cancer screening and currently serves as PI for a large scale federally funded randomized implementation project (1R18AE000023-01). He has also served as PI for demonstration projects, funded by the Foundation for Informed Medical Decision Making, focused on the implementation of DESIs in routine clinical practice in primary and specialty care settings since 2006. His research draws extensively on qualitative research methods to identify factors associated with successful implementation of DESIs, as well as patient perspectives on shared decision-making and patient centered care.

Paul M. Haidet M.D., M.P.H., is the Director of Medical Education Research and a Professor of Medicine, Humanities, and Public Health Sciences at the Pennsylvania State University College of Medicine. Dr. Haidet received his medical degree from the Pennsylvania State University, and his masters in public health from Harvard University. Dr. Haidet's career has focused on relationships in medicine, including patient-physician, student-teacher, and individual-organization relationships. His work in these realms has been cited widely, and he is the recipient of several national awards, including the 2011 Master Scholar Award from the International Association of Medical Science Educators. Dr. Haidet serves as the current President of the American Academy on Communication in Healthcare, and is a deputy editor for the journal Medical Education. Most recently, Dr. Haidet has been exploring the intersections of jazz music and medicine, in an effort to improve the improvisational skills of physicians.

Hilary A. Llewellyn-Thomas, Ph.D., is Professor Emeritus, Department of Community and Family Medicine, Dartmouth Medical School. For over 30 years, Dr. Llewellyn-Thomas has worked in the decision sciences in health care, with a particular emphasis on the theoretical and methodological issues inherent in the study of patients’ information comprehension and the elicitation of patients’ preferences. Her research focuses on the issues involved in incorporating patients’ perspectives into health care. Specific areas include: 1) patients’ attitudes toward experienced and anticipated health states; their preferences for treatment alternatives, involvement in treatment decisions, and participation in clinical trials; their attitudes toward the time involved in waiting for, undergoing, and recovering from treatment; and their understanding of the risk/benefit probabilities involved in different treatment options; 2) concepts of decisional conflict and decision support as a clinical skill; and 3) evaluation of the effectiveness of interventions designed to support informed patient choice.

Dr. Llewellyn-Thomas received her BSc (1968) and MSc (1977) degrees from the University of Toronto, and her PhD (1983) degree from the Institute of Medical Science in the Faculty of Medicine at the University of Toronto. From 1989 until 1999, Dr. Llewellyn-Thomas held two consecutive 5-year awards as a National Health Scholar, from the National Health Research and Development Program in Canada. In 1993-1994, she served as the President of the Society for Medical Decision Making. In 1994-1997, she served as a Member of the Advisory Committee on Science and Research for the Medical Research Council in Canada. Since its formation in 1999, she has continued to serve as a co-author of the regularly-updated Cochrane Collaboration’s Systematic Review of Patients’ Decision Aids.

In 2000, Dr. Llewellyn-Thomas was recruited from the University of Toronto to Dartmouth Medical School to assume a Professorship in the Department of Community and Family Medicine and in the Center for the Evaluative Clinical Science (CECS; now The Dartmouth Institute for Health Policy and Clinical Practice, or TDI). As the CECS/TDI’s Andrew Thomson, Jr. Fellow in Shared Decision Making, she served as a founding Research Director for the Center for Shared Decision Making at Dartmouth-Hitchcock Medical Center, and as Co-Director of the Center for Informed Choice in TDI.

Since its formation in 2003, she has continued to serve as the co-editor of the International Patients’ Decision Aids Standards Collaboration. In 2004, the Society for Medical Decision Making awarded Dr. Llewellyn-Thomas the John M. Eisenberg Award for Leadership in Medical Decision Making Research. In 2007, she served as the Director of the inaugural annual Dartmouth Summer Institute on Informed Patient Choice (SIIPC); she obtained AHRQ grant support and continued as the Director for subsequent SIIPCs in 2008, 2009, and 2010.