Wendy R. Uhlmann, MS, CGC is the genetic counselor/clinic coordinator of the Medical Genetics Clinic at the University of Michigan. She is a Clinical Professor in the Departments of Internal Medicine and Human Genetics and an executive faculty member of the genetic counseling training program. Wendy Uhlmann is a Past President of the National Society of Genetic Counselors and previously served on the Board of Directors of the Genetic Alliance and as NSGC’s liaison to the National Advisory Council for Human Genome Research.
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Funded by the Department of Veterans Affairs
Funding Year: 2011
A current priority for VA research is "Healthcare Informatics to Improve Veteran Care Healthcare." This priority area recognizes the critical importance of developing effective technological tools for Veterans to improve their understanding of and capacity to be actively involved in shared decision making about key health issues. Making The Choice - VA will develop new materials specifically for VA patients who have prostate cancer. The tool will help in shared and informed decision-making related to prostate cancer treatment options and outcomes.
Aim 1. Develop a web-based platform that will support informed shared decision making for patients. The focus will be prostate cancer treatment options.
Aim 2. Use values clarification method, conjoint analysis, in this first iteration of the platform.
Angela Fagerlin (PI)
Funded by Department of Veterans Affairs
Funding Years: 2009-2012
Because CRC-predictive genetic tests offer the potential to optimize CRC screening efforts, improving the communication and use of such tests by the millions of veterans who are screened for CRC each year could result in both improved cancer surveillance and more efficient (and potentially reduced) VA resource utilization. Our study will provide empirical data about practical risk communication methods that can be used in the future by VA clinicians to present genetic tests to veterans and about patient-level barriers which will inhibit acceptance of genetic tests that predict colorectal cancer risk within the VA patient population. By evaluating alternate methods of communicating genetic test results before such tests actually become available, we hope to identify optimal approaches that can be integrated into VA genomics initiatives from the very start.
Angela Fagerlin (PI)
Dr. Aisha Langford was a VA and CBSSM Postdoctoral Research Fellow, 2013-2015. She received her PhD from the department of Health Behavior and Health Education at the University of Michigan School of Public Health in Ann Arbor. From 2007 -2013, she directed the University of Michigan Comprehensive Cancer Center’s Community Outreach Program. Her research interests include chronic disease prevention and control, health communications, medical decision making, and clinical trial participation. Aisha is from the San Francisco Bay Area and earned her BA from the University of Virginia.
This symposium will promote dialogue and contribute to a research agenda on how learning health system organizers should engage the ethical, legal and social implications of this work.
The next generation of health information technology organizes data into large, networked systems to address challenges of U.S. health systems: spiraling costs, poor health outcomes, safety issues, unproductive research enterprises, and failure to implement known clinical best practices. More than simply “Big Data,” these systems are arranged as “learning health systems,” multi-stakeholder federations that gather and analyze data to create useful knowledge that is disseminated to all stakeholders. Harnessing the power of health data for learning strains ethical, legal, and social paradigms for how health information should be collected, stored, accessed, used, and destroyed.
CBSSM is a co-sponsor, along with the Brehm Center, the Michigan Institute for Clinical and Health Research (MICHR), the School of Public Health, and Healthcare Information and Management Systems Society (HIMSS).
Funded by NIH - Department of Health and Human Services
Funding Years: 2011-2016
Disorders of Sex Development are defined as congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical. One of the most defining moments of our lives is when, in the womb, we embark on a male or female path. Disruption of typical male or female development, whether mild or severe, results in DSD, which occur quite frequently, in about 1% of the human population. DSD are extremely stressful for parents and, as they grow older, the affected person and are often accompanied by additional medical and psychological problems; yet little is known about the causes of DSD and what healthcare teams should do in the short and long term. This project proposes to design a way to learn about the genetic causes and the psychological consequences of DSD, and to use these data to provide healthcare teams with procedures to evaluate and improve care for these patients and their families.
PI(s): David Sandberg
Co-I(s): Eric Vilain, Edward Goldman
Funded by Robert Wood Johnson Foundation
Funding Years: 2013-2014
Patients and the public are being inundated with a flood of health data and being asked to take a greater role in applying this data to make medical decisions regarding their own health. While general guidelines exist for "best practices" in medical risk communication, this work has not always considered the specific communication goals of the risk message or the specific information or practical needs of the patient. The Communicating Health and Risk Messages (CHARM) project will address the gap in our current knowledge by informing the design of health risk data visualizations across the full spectrum of risk communication goals.
PI(s): Vic Strecher, PhD, MPH
Co-I(s): Lawrence An, Angela Fagerlin, Kenneth Resnicow, Brian Zikmund-Fisher
Funded by the National Institutes of Health
Funding years: 2009-2014
The Specific Aims of this study are (1) to examine patterns and correlates of quality of adjuvant chemotherapy in a population-based sample of women, (2) to examine patterns and correlates of quality of breast cancer hormonal therapy in a population-based sample of women with breast cancer, and (3) to estimate the frequency of classification error in key pathologic variables-ER and HER2 status-in a population-based sample of women with breast cancer and explore the impact of such error on receipt of optimal adjuvant systemic therapy. We propose to investigate these factors through patient interview, medical record review, and repeat assessment of pathologic variables on primary tumor specimens. The results of this study will be used to advance methods in oncology outcomes research and to inform policy and practice interventions to improve the quality of breast cancer care in the United States. For more information, visit NIH Reporter.
PI(s): Jennifer Griggs, Steven Katz
Co-I: Sarah Hawley
Emily joined CBSSM as a Research Associate in 2018 after a circuitous journey in social science research from academia to industry and back. She has worked with mental health research at the Institute for Social Research, medical education and health disparities at UM Medical School’s Global REACH, and spent more than a decade supporting pharmaceutical quantitative and qualitative survey research. Emily works with Dr.