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Funded by Patient-Centered Outcomes Research Institute (PCORI).

Funding Years: 2013-2017

The birth of a child with a disorder of sex development (DSD) is stressful for parents and members of the healthcare team. The "right" decisions about gender assignment (is it a boy? a girl?) and the best course of action (e.g., should there be surgery? what kind? when?) are not obvious. While there have been large advances in diagnostic assessments like genetic and endocrine testing, the tests do not always show what caused the DSD. And, even when the tests do reveal an explanation for the DSD, knowing what happened genetically or hormonally does not usually lead to a single "correct" treatment plan. Instead, it is likely that there are different acceptable treatment options - and parents will need to make decisions based, in part, on their personal preferences, values, and cultural background. Adding more stress to the situation is knowledge that many of the decisions that need to be made by parents early in a child's life are irreversible and exert life-long consequences for the child and the family.

To support parents becoming actively involved in making such decisions, and to reduce the likelihood of future worry and regret about decisions that have been made, the investigators will create a decision support tool (DST). The DST will help educate families about typical and atypical sex development of the body, the process by which DSD are diagnosed (especially how to interpret genetic test results), and possible relationships between diagnostic/genetic testing, decisions about care, and known consequences of those decisions on their child and entire family. The DST will be used by parents of young children together with their child's health care provider.

The investigators will bring together a network of researchers, health care providers, representatives of patient support and advocacy organizations, and parents of children with DSD to share their experiences. Participants of this network will be involved at each stage of creating the DST, revising it, and putting it into practice. At the end of this project, the investigators will have a fully formed and tested DST that will be available for parents to use with their child's health care team as they are first learning their child may have a DSD.

PI(s): David Sandberg

Co-I(s): Edward Goldman, Catherine Keegan, Beth Tarini, Beverly Yashar

 

Wed, June 11, 2014

Carl Schneider, JD was quoted in a recent LA Times article titled "Scale of medical decisions shifts to offer varied balances of power" He discussed the role of doctors and patients in the process of medical decision making, "People want to know what's going on, but that doesn't necessarily mean they want to make the decision."

Research Topics: 

Funded by the Department of Health and Human Services, NIH.

Funding Years: 2010-2014

The overarching goal of this proposal is to improve decision making about organ quality in Liver Transplantation, specifically by increasing transparency, improving patient knowledge and satisfaction, and maintaining patient and public trust in the transplant system. In addition, this research may improve patient outcomes by ensuring that high risk organs go to patients who are most likely to benefit from them. For more information, visit NIH Reporter.

PI(s): Michael Volk

 

Tue, September 20, 2011

The CBS News website recently featured 10 tips to make better decisions about cancer care from U-M’s Angela Fagerlin, Ph.D., associate professor of internal medicine. Below is an excerpt from the article:

Cancer is scary, and doctors sometimes sound as if they’re speaking a foreign language when talking about the disease and its treatment. But “people are making life and death decisions that may affect their survival and they need to know what they’re getting themselves into,” says Fagerlin “Cancer treatments and tests can be serious. Patients need to know what kind of side effects they might experience as a result of the treatment they undergo.”

 

Maria Silveira, MD, MPH, is the lead author on an article in the New England Journal of Medicine (April 1, 2010) on end-of-life decision making. Silveira and her colleagues found in a large-scale study that more than a quarter of the elderly lacked decision-making capacity as they approached death. Those who had advance directives were very likely to get the care that they wanted. Co-authors on the study are Kenneth Langa, MD, PhD, and Scott Y.H. Kim, MD, PhD. Read a press release about the article here.

A new $13.6 million program award from the National Cancer Institute awarded to a national team of researchers centered at the U-M Comprehensive Cancer Center will examine how patients make treatment decisions, how doctors make treatment recommendations and how to improve the process for better outcomes.

Steven J Katz, MD, MPH, Co-Director of the Socio-Behavioral Program at the UM Comprehensive Cancer Center is theprincipal investigator on this new program grant.

Several CBSSM-affiliated faculty are involved with this project: Sarah Hawley, PhD, MPH and Jennifer Griggs, MD, MPH are program lead investigators,and Angela Fagerlin, PhD (CBSSM Co-Director) and Reshma Jagsi, MD, PhD are also investigators on this grant. Click here for more information.
 

 

Sarah Hawley, PhD, MPH

Faculty

Dr. Sarah T. Hawley is a Professor in the Division of General Medicine at the University of Michigan and a Research Investigator at the Ann Arbor VA Center of Excellence in Health Services Research & Development. She holds a PhD in health services research from the University of North Carolina and an MPH from Yale University Department of Public Health. Her primary research is in decision making related to cancer prevention and control, particularly among racial/ethnic minority and underserved populations.

Last Name: 
Hawley

Funded by Robert Wood Johnson Foundation

Funding Years: 2015-2016

The researchers will examine the extent to which consumers who are in high-deductible health plans (HDHPs) engage in behaviors that help them optimize value. Employing a nationally representative survey, the researchers will explore: (1) how often and in what situations consumers engage in key value-promoting behaviors such as budgeting for health services, choosing settings of care based on price and/or quality, engaging in shared decision-making with providers that considers cost, and negotiating prices for services; (2) which consumers are most likely to engage in these behaviors; (3) which behaviors consumers find most beneficial in maximizing the value of their out-of-pocket (OOP) expenditures; (4) what are the facilitators of and barriers to consumers’ engagement in value-promoting behaviors; and (5) what are consumers’ attitudes and intentions towards engaging in value-promoting consumer behaviors in specific clinical situations. The goal of this project is to inform policymakers, payers, health systems, providers and consumers about the frequency and perceived effects of value-promoting consumer behaviors in HDHPs.

PI(s): Jeffrey Kullgren

Co-I(s): Angela Fagerlin, Helen Levy, A. Mark Fendrick

Funded by the National Institutes of Health

Funding years: 2011-2015

Colorectal cancer has a major impact on Americans, yet its screening rate remains suboptimal. This study aims to improve colorectal cancer screening rate by using an innovative and interactive decision aid that helps patients choose among colorectal cancer screening options. The study will also elucidate how patients and physicians discuss colorectal cancer screening options. for more information visit NIH Reporter.

PI: Masahito Jimbo

Co-I: Sarah Hawley

Funded by Health and Human Services, Department of-National Institutes of Health

Funding Years: 2014 - 2016.

Mexican Americans (MAs) suffer more from stroke than non-Hispanic whites (NHWs). Ischemic stroke is more common in MAs and their neurologic, functional and cognitive outcomes after stroke are worse than in NHWs. The reasons for the disparity in post-stroke outcome are unclear. Pre-stroke function and initial stroke severity are similar between the two groups as are ischemic stroke sub-types. One potential explanation for the worse post-stroke neurologic, functional and cognitive outcome in MAs compared with NHWs is allocation and effectiveness of post-stroke rehabilitation. There is remarkably little data demonstrating whether rehabilitation is dosed differently for MAs compared with NHWs, and still less information about whether, for a given dose of rehabilitative services following stroke, there is differential benefit by ethnicity. The current application will utilize the existing population-based Brain Attack Surveillance in Corpus Christi (BASIC, NSR0138916) project's infrastructure and strong community relations to develop and pilot a method to collect the necessary data to determine the role of rehabilitation in ethnic disparities in post-stroke outcomes. Previous studies have suggested that looking at overall time spent in rehabilitation does not predict post-stroke outcome. However, specific components of physical, occupational and speech therapy, a practice-based approach, has been shown to be associated with stroke outcomes, and these associations have been shown to vary by race. However, this practice-based approach has not been implemented in a population-based manner across the range of settings where stroke patients receive rehabilitation services, and no study has used this approach in an ethnically diverse population. Therefore, our plan is to build on previous work by developing and utilizing a practice-based design in our population-based stroke study. Specifically, we will 1) continue to build the needed relationships with rehabilitation service providers in the community;2) work with local rehabilitation therapists to refine data collection instruments as part of the practice-based design;3) pilot test data collection of specific rehabilitation components of post-stroke rehabilitation across all rehabilitation settings;and 4) analyze this data to determine the feasibility of this approach for a larger study and to provide preliminary data on differences in access and effectiveness by ethnicity. In total, our infrastructure development, refinement of tools to measure specific therapy modalities and pilot testing will position us perfectly to submit an R01 application to identify ethnic differences in access to rehabilitation and specific rehabilitation services associated with improved functional outcome in MAs and NHWs.

PI(s): Lynda Lisabeth, Lewis Morgenstern

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