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Brian Zikmund-Fisher, PhD, is the featured guest editor for a special supplement to Medical Decision Making's September/October 2010 issue, highlighting the DECISIONS study, a nationwide survey of adults in the US regarding common medical decisions. Lead author on the main paper of the supplement, Zikmund-Fisher and co-authors (including CBSSM faculty Angela Fagerlin, PhD and Mick Couper, PhD) describe the DECISIONS study, a telephone interview of a nationally representative sample of 3010 adults age 40 and over faced with making a medical decision in the past two years. Researchers defined medical decisions as the patient having initiated medications, been screened, or had surgery within the past 2 years or having discussed these actions with a health care provider during the same interval. Key findings from the study:
Although patients frequently receive information about the benefits of a procedure or medication, they don't always learn about the disadvantages.
Healthcare providers don't always ask patients what they want to do.
Most patients don't use the Internet to help them make common medical decisions; healthcare professionals remain the most important source of information.
Patients often don't know as much as they think they do. Many patients feel well informed even when they don't know key facts that would help them make a better decision.
African-Americans and Hispanics were less knowledgeable than other patients about medications to treat high cholesterol. In addition, they were more likely to say their doctor made decisions about cholesterol medications for them.
Most patients think they are more likely to get cancer than they really are, and tend to view cancer screenings as more accurate than they are.
Men and women think about cancer risks differently. Women are more active participants in cancer screening decisions regardless of their perception of risk, whereas men tended to get involved only if they felt at higher risk.
Funded by National Institutes of Health
Funding Years: 2015-2020
Every day in hospitals across the country, patients with severe stroke and their families are faced with decisions about life-sustaining treatments in the initial hours of admission. These decisions about resuscitation status, invasive treatments, or possible transitions to comfort care are typically made by a surrogate decision- maker due to communication or cognitive deficits in the patient. This surrogate must consider the patient's life goals and values to determine if their loved one would choose on-going intensive treatments where they may survive and yet have long term disabilities, or prioritize comfort and accept the likelihood of an earlier death. Serving as a surrogate decision maker for a patient in the intensive care unit can have long lasting negative consequences. However, almost nothing is known about surrogate decision makers in diverse populations with stroke. Hispanic Americans are now the largest minority group in the US, rapidly growing and aging, with Mexican Americans comprising the largest subgroup. Multiple disparities have been identified in stroke incidence and outcome between Mexican Americans and non-Hispanic Whites, particularly in the use of life- sustaining treatments. Minority populations may be particularly vulnerable to inadequate communication about end-of-life issues due to socioeconomic disadvantage, poor health literacy, and lack of provider empathy and health system strategies to improve communication. However, Mexican American culture includes strong values of family support and religiosity that may have a positive influence on discussions about life-sustaining treatment and adapting to stroke-related disabilities. There is currently a critical gap in understanding the perspectives and outcomes of stroke surrogate decision makers, making it impossible to design interventions to help diverse populations of patients and families through this incredibly trying time.
PI(s): Lewis Morgenstern, Darin Zahuranec
Co-I(s): Lynda Lisabeth, Brisa Sanchez
It's 2009. Early in the year, a 9-year-old girl from California became the first person with a confirmed case of H1N1 ("swine") influenza in the United States. Shortly thereafter, the U.S. declared a public health emergency and the World Health Organization declared a phase 6 pandemic (the highest level possible). By September 2009 a vaccination was developed and was available within a month.
You've been following the news about the H1N1 influenza as developments have unfolded throughout the year, and you feel some concern. You have been wondering about the risk of coming down with the H1N1 flu yourself and have been thinking about whether you should be vaccinated.
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
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.
Funded by National Institutes of Health.
Funding Years: 2013-2016.
With the growing importance of biobank research, concerns have been raised about how to protect the interests of donors. The current ethics framework mainly focuses on protecting against risks to donors' welfare and to their privacy. However, there has been little systematic empirical, normative, or policy focus on the non-welfare interests of donors, i.e., concerns about the moral, societal, or religious implications of research using their donation that may affect their willingness to donate. Although important theoretical discussions, mentions in commission reports, and insights from several qualitative studies have drawn attention to the serious nature of these interests, we lack important data for policy development: (1) systematic data on the nature and extent of potential impact of non-welfare interests and (2) high quality (i.e., informed and considered) policy preferences of the public addressing how to balance these non-welfare interests with the promise of biobank research. Our project will fill these gaps with two complementary projects. First, a national survey will assess the contours of the potential impact of non-welfare interests on biobank research, by addressing: what kinds of non-welfare interests substantially affect willingness to donate biological materials?; how common are these interests?; how much do donors want to know about the potential involvement of such non-welfare interests when donating?; how are non-welfare interests affected by such factors as race or ethnicity, socioeconomic status, trust in medical research, religious beliefs and practice, or political orientation? Second, we will obtain considered, informed judgments of the public regarding how to handle the tension between the public good of biobanks and the conflicting non-welfare interests of potential donors, using a democratic deliberation method in which subjects will attend an all-day education and peer deliberation session. The impact of the deliberation will be validated using a randomized, experimental design. In summary, despite the ethical significance of non-welfare interests for biobank research, there is a paucity of systematic data regarding both their potential impact and the potential policy solutions. This project will provide a highly generalizable assessment of the potential impact of non-welfare interests as well as policy recommendations based on informed, deliberative opinions of the general public. Visit the NIH website for more information.
PI(s): Tom Tomlinson, Raymond De Vries
Co-I(s): Karen Kelly-Blake, H. Myra Kim, Blake J Roessler