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Funded by Foundation for Informed Medical Decision Making

Funding Years: 2007 -2008

 

The National Survey of Medical Decisions (the DECISIONS study), co-led by CBDSM investigators Mick Couper (PI) and Brian Zikmund-Fisher (co-I), is a unique effort to collect nationally representative data about when and how middle-aged and older adults manage the medical decisions they face.

The DECISIONS study consisted of a random digit dial telephone survey of 3,010 adults over the age of 40 in the United States conducted between November 2006 and May 2007.  Participants were asked a series of screening questions to identify which of 10 common medical decisions they may have discussed with their health care providers in the previous two years and then completed 2-3 question modules regarding specific decisions that were relevant to each individual. 

Its initial screening module gathered highly generalizeable data regarding the prevalence of different types of common medical decisions in the experience of older Americans.  Its dynamically-administered modules then requested detailed information regarding how and when patients discuss key medical decisions with their health care providers and whether variations in decision-making processes may have influenced patients’ medical care. 

Funded by the Foundation for Informed Medical Decision Making (FIMDM), the DECISIONS project has been a highly collaborative project that has included investigators from Institute for Social Research and FIMDM, as well as CBDSM. In addition, FIMDM-affiliated researchers from around the country are analyzing DECISIONS data to inform their research. While the initial papers from the DECISIONS dataset will be by core investigators, the study team intends to make the dataset publicly available for more widespread use sometime in 2009.

Mick Couper (PI)

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; National Institute on Aging

Funding Years; 2011-2016

A cornerstone of the nation's social science research infrastructure, the Panel Study of Income Dynamics (PSID) is a longitudinal survey of a nationally representative sample of U.S. families. Begun in 1968, 36 waves of data have now been collected on PSID families and their descendents. Its long-term measures of economic and social wellbeing have spurred researchers and policy makers to attend to the fundamental dynamism inherent in social and behavioral processes. The PSID is increasingly being used to answer innovative social and behavioral research questions in the context of an aging society. This application proposes to collect, process, and disseminate three modules in the 2013 and 2015 waves of the PSID: 1. Health module: Including 15 minutes of survey questions on health status, health behaviors, health insurance coverage & health care costs. Linkages to the National Death Index and Medicare will be extended; 2. Wealth module: Including 10 minutes of survey questions on wealth, active savings, and pensions. Linkage to Social Security earnings and benefits records for active sample and decedents will be undertaken for the first time, and a new module to minimize errors in reports of wealth changes will be developed and implemented; and 3. Wellbeing module with related psychosocial measures: We will design and implement a mixed-mode (web/mail out) questionnaire to collect content from both respondents and spouses about their wellbeing and related psychosocial measures (e.g., personality, intelligence), with an experiment to identify (and allow researchers to adjust for if necessary) mode effects. After collection, the data will be processed and distributed in the PSID Online Data Center, which will allow users to create customized extracts and codebooks using a cross-year variable index.

PI(s): Robert Schoeni

Co-I(s): Charles Brown, James House, Mick Couper

Funded by National Institutes of Health

Funding Years: 2015-2020

Deaf American Sign Language (ASL) users are nearly seven times more likely to have inadequate health literacy when compared with their hearing peers. This population is the non-English speaking minority group at greatest risk for miscommunication in health care settings. Health literacy mechanisms for deaf individuals remain poorly understood, thereby limiting interventions to address health literacy disparities and their impact on health care. It is unclear how differences in attitudes, knowledge, and skills related to health information affect health literacy in deaf populations and how they may contribute to ongoing health inequities. The two primary objectives of this proposal are: 1) to elucidate the role of information marginalization on health literacy in Deaf American Sign Language (ASL) users and 2) to better understand the mechanisms of health literacy in this population so as to identify viable targets for future health literacy intervention development. This proposal is responsive to PAR-10-133's request for studies that assess mechanisms underlying health literacy, including roles of cognition, culture, language fluency, and information-seeking and interpretation ability in the deaf population and, how these may differ from the hearing population. To meet the study objectives, we will employ an explanatory sequential mixed methods design using extensive quantitative data collection procedures, namely, cross-sectional surveys and measures that will identify predictors and moderators of health literacy with 450 deaf and 450 hearing subjects across three geographically diverse sites. These results will inform the subsequent qualitative assessment that will help explain the quantitative results, and elucidate how and why deaf individuals access and understand health information. We will incorporate cutting edge technology to assess health information-seeking and interpretation patterns in this population, in addition to using a variety of validated and ASL-accessible instruments to assess health literacy and other constructs related to health literacy. The diverse team, consisting of both leading deaf and hearing researchers, provides a unique insight into how health information is distributed and disseminated visually. This approach has the potential to generate rich data on how to formulate health information and health literacy interventions for individuals with hearing loss.

PI(s): Michael McKee

Co-I(s): Lorraine Buis, Michael Fetters, Ananda Sen

Bioethics Grand Rounds

Wed, January 25, 2017, 12:00pm
Location: 
UH Ford Amphitheater & Lobby

Meredith Walton presents "Opting In or Opting Out: The Ethical Principles Underlying Two Methods of Organ Donation."

Abstract: Recent legislation in France adopting an opt-out system of organ donation has again brought the issue of presumed consent in organ donation to the forefront of ethical discussion.  Proponents of the legislation have used the idea of ‘normative consent’ to justify it, as well as the expected increase in donation rates. But those opposed have argued that it strips the individual of their autonomy and does not in fact increase donation rates.This presentation seeks to define opt-in and opt-out systems of organ donation, explore principles of autonomy and consent surrounding the issue and reflect on whether adopting an opt-out system will truly increase the rate of organ donation

Tue, January 03, 2017

Reshma Jagsi was lead author on a recent study that found many patients with breast cancer unnecessarily choose double mastectomy. This study found that many patients consider contralateral prophylactic mastectomy (CPM), but their knowledge about the procedure is low and discussions with surgeons appear to be incomplete. CPM use is substantial among patients without clinical indications but is lower when patients report that their surgeon recommended against it. The study authors stress that more effective physician-patient communication about CPM is needed to reduce potential overtreatment.

CBSSM faculty, Sarah Hawley, was a co-author on this study.

Wed, February 01, 2017

Sarah Hawley and Reshma Jagsi are co-authors on two studies of the impact of doctor-patient communication on patients' perceptions of their breast cancer recurrence risk. They found that breast cancer patients commonly overestimate their risk of recurrence, which was a negative impact on their quality of life. The two studies were highlighted in a MHealth Lab Report. Brian Zikmund-Fisher was also co-author on one of these studies.

Bioethics Grand Rounds

Wed, February 22, 2017, 12:00pm
Location: 
UH Ford Amphitheater & Lobby

Devan Stahl, Assistant Professor, Center for Ethics and Humanities in the Life Sciences, Department of Pediatrics and Human Development Adjunct Assistant Professor, Department of Philosophy

Title –  Responding to Hopes for a Miracle

Abstract: How should clinicians respond to patient’s or family’s hope for a “miracle”? What if the family wants to continue aggressive care that clinicians believe is non-beneficial in the hopes that a miracle will occur? The presentation will frame the discussion of miracle language and offer practical guidance on working with patients and families who invoke miracle language during a patient’s hospital stay.

At the end of this presentation participants will be able to:

1. Classify and distinguish between the most common ways patients/families use miracle language
2. Describe the ethical tensions that emerge when families request that clinicians continue non-beneficial care in the hopes a miracle will occur
3. Identify a set of strategies for productively engaging with patients/families who expect miracles

Jacquelyn Miller, MA

Research Associate

Jackie re-joined CBSSM in spring of 2017. She currently works with Drs. Lesly Dossett and Tom Valley on projects related to the worries and concerns of those with loved ones in the ICU, feedback and disclosure of errors that have occurred in other hospital systems, and opioid prescribing after cancer surgery. She has a BS in Environmental Policy and Developing Country Studies (University of Michigan, School of Natural Resources and Environment) and a MA in Sociology, specializing in environmental justice, feminist sociology, and science and technology studies (Michigan State University).

Last Name: 
Miller

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