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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

 

CBSSM Seminar: Jacob Solomon, PhD

Thu, November 19, 2015, 3:00pm to 4:00pm
Location: 
NCRC, Building 16, Room 266C

Jacob Solomon, PhD


CBSSM Postodoctoral Fellow

Title:

Designing the information cockpit: The impact of customizable algorithms on computer-supported decision making

Abstract:

Intelligent systems that provide decision support necessitate interaction between a human decision maker and powerful yet complex and often opaque algorithms. I will discuss my research on end-user control of these algorithms and show that designing highly customizable decision aids can make it difficult for decision makers to identify when the system is giving poor advice.

Funded by the National Institutes of Health.

Funding Years: 2011-2016. 

While substantial progress has occurred recognizing community expertise in Research, and involving Communities in Decisions about Research aims and methods, community influence on Research Funding priorities remains limited. Building on experience with developing, Testing and using the successful CHAT (Choosing Healthplans All Together) tool, we plan to modify an existing priority setting simulation exercise to develop a tool to engage minority and underserved Communities in setting priorities for clinical and translational Research, evaluate it from the perspective of those who participate, and examine the extent to which it actually influences Research priorities. This tool could be valuable to Research Funding organizations, community-academic partnerships, community organizations asked to participate in Research, and others aiming to engage Communities in Research. For more information, visit NIH Reporter

PI(s): Susan Goold

Co-I(s): Kathryn Moseley 

 

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.
 

 

MD vs. WebMD: The Internet in Medical Decisions (Dec-10)

With just a simple search term and a click of the mouse, a person can find a large amount of health information on the Internet. What role does the Internet play in how patients make medical decisions? Does using the Internet as a source for information to help patients make informed decisions vary by health condition? Does the Internet substitute for detailed discussions with a health care provider?

Consider the following:

Imagine that you recently visited your health care provider for an annual physical examination. During the exam your doctor told you that you are at the age where you should start thinking about getting a screening test for colon cancer. In this conversation your health care provider explained some of the reasons why you should get screened. At the end of the visit, you had more information about screening tests for colon cancer but had not yet decided whether or not you wanted to get tested.

As you think about how you would make a decision about whether or not to get screened for colon cancer:
 
How important is your health care provider as a source of information about screening tests for colon cancer?
Not at all important (1) (2) (3) (4) (5) (6) (7) (8) (9) (10) Extremely important
 
Would you use, or have someone else use for you, the Internet to find information on screening tests for colon cancer?
 
  • Yes
  • No
  • Don't know
How important is the Internet as a source of information screening tests for colon cancer?
Not at all important (1) (2) (3) (4) (5) (6) (7) (8) (9) (10) Extremely important
 
 
 

How do your answers compare?

In a recent study published in the journal Medical Decision Making, CBSSM investigators Brian Zikmund-FisherMick Couper, and Angela Fagerlin examined Internet use and perceived importance of different sources of information by patients making specific medical decisions.

In this study, US adults aged 40 years and older were asked about how they got information about 9 common medical decisions, including decisions about common prescription medication (for high blood pressure, cholesterol, and depression), cancer-screening tests (for colorectal, breast, and prostate cancer), and elective surgeries (for lower back pain, cataracts, and knee/hip replacement). In addition, they study compared participants' ratings of the Internet as a source of information with their ratings of other sources, such as their health care provider.

So, how did your responses compare to the average adult in this study's population?

Results from this study showed that most patients did not use the Internet to make specific medical decisions like the ones you considered. On average, about 26% of participants made use of the Internet for information to make decisions about colon cancer screening tests and about 47% used it to inform a decision about lower back pain surgery.

Among participants who chose to use the Internet for finding information about specific medical decisions, data show that Internet use varies significantly across different types of medical decisions. Internet users were more likely to use the Internet for information related to elective surgery (36%), such as lower back pain surgery, and prescription medication (32%) than for cancer-screening decisions (22%), such as colon cancer screening.

Another element of this study looked at participants' ratings of different information sources. You are unlike other participants in this study in that you did not consistently rate health care providers as the most important source for information about colon cancer screening and lower back pain surgery. The CBSSM study found that, for both Internet users and nonusers, health care providers were rated highest as a source for information for all 9 decisions studied. Among Internet users, however, the Internet was rated as their 2nd-most important source of information.

The researchers found that Internet use to inform specific medical decisions varied by age ranging from 38% for those aged 40 to 49 years to 14% for those aged 70 years or older. Approximately 33% of 50 to 59 year olds used the Internet to make these medical decisions and 24% for those in the 60 to 69 year age category. This result is consistent with previous research on the demographics of Internet use.

The study authors concluded that the Internet has an impact on people's access to health care information; however, "the data suggest that access is not the same as use, and use for one medical decision does not imply use for all health decisions." In other words, people use the Internet differently depending on the context. The authors end by stating, "Clinicians, health educators, and health policy makers need to be aware that we remain a long way away from having Internet-based information sources universally used by patients to improve and support the process of medical decision making."

For the full text of this article:

Couper M, Singer E, Levin CA, Fowler F, Fagerlin A, Zikmund-Fisher BJ. Use of the internet and ratings of information sources for medical decisions: Results from the DECISIONS survey. Medical Decision Making 2010;30:106S-114S.

 

Funded by National Science Foundation.

Funding Years: 2015-2017.


When thinking about infectious diseases and making decisions about how to protect themselves, people often overreact to infectious diseases with low risk of infection, such as Ebola, and at other times fail to respond to infectious diseases with higher risk of infection, such as the flu. Both types of responses can lead to negative outcomes such as stress and anxiety, less productivity at work, and inefficient use of healthcare resources (either using too much or too little depending on the disease). We think that one reason that people may exhibit these responses to infectious diseases is that there may be a conflict between their beliefs about their risk and their feelings about their risk. This research will examine areas of misinformation and emotional responses to three infectious diseases: Ebola, the flu, and MERS. After identifying key areas of misinformation and excessive or subdued emotional responses to these three diseases, the research team develops and tests a number of communication strategies that best correct misinformation and resolve conflicts between beliefs and feelings of risk to motivate more appropriate responses to infectious diseases. After determining which strategies are better at doing those things than others, the research team creates a website to display "best-practices" in communicating about infectious diseases.

This research involves conducting a number of web studies to investigate when and for whom cognitive- and affective-based communication strategies work best at modifying cognitions, affect, and behavioral intentions towards pandemic risks. The research uses the theory of "risk-as-feelings". These studies will advance our understanding of risk-as-feelings in a number of ways. First, the research team examines the frequency of simultaneous contradictory responses (SCRs) - when beliefs and feelings of risk conflict - at least with these three infectious diseases. Second, the research team tests for the existence of simultaneous contradictory affective responses. Third, the team then assesses the relative influence of cognitive and affective sources of information on cognitions, affective reactions, and behavioral intentions, as well as in the possible resolution of SCRs. Fourth, the application of risk-as-feelings to determine optimal communication strategies about these infectious diseases should serve as a test-case for the utility of incorporating risk-as-feelings into public health theories of health behavior and communication. Fifth, due to its foundation in the theory of risk-as-feelings, insights gleaned from the current studies should help shape the way information is communicated about other public health issues beyond these disease. And finally, the research tests whether resolving SCRs is key to inducing appropriate responses to pandemic risks or whether improving knowledge, acknowledging fears, and/or improving feelings of efficacy, is sufficient to improve responses, as would be predicted by standard health behavior theories from public health.

PI(s): Brian Zikmund-Fisher

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