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Funded by NIH: National Cancer Institute

Funding Years: 2008-2014

Prostate cancer is a leading cause of cancer death among men, and thousands of men must make treatment decisions every year. Decision making for localized prostate cancer is especially challenging as clinical trials have shown that the standard treatment options of active surveillance, surgery and radiation are comparable in terms of survival. Thus, treatment for prostate cancer is a preference-sensitive decision, with the best choice depending in part on patient attitudes towards the risks and benefits of treatment alternatives. Therefore, ideally the treatment decision will be made with full consideration of patient preferences. As such, it is recommended that patients and their physicians discuss any preferences patients have that might be relevant to the treatment decision. This dialogue is complicated by patients’ lack of experience with sharing in these types of decisions. Additionally, physicians often use medical jargon, making it more difficult for patients to understand their diagnosis and treatment options.  Research is needed to determine the best methods for helping patients communicate their preferences to their physicians so that patient values hold considerable weight in treatment decisions.

The goals of this study are two-fold:

  • To demonstrate to patients some of the issues that might arise during their diagnosis visit that may prevent them from communicating preferences to physicians.
  • To provide solutions that would enable greater patient participation in medical decision making.

PI(s): Angela Fagerlin, PhD and Peter A. Ubel, MD

Co-I(s): John T. Wei, MD; Brian Zikmund-Fisher, PhD; Margaret Holmes-Rovner, PhD; James Tulsky, MD; Stewart Alexander, PhD

Parent grantMichigan Center for Health Communication Research II

ELSI-LHS Symposium

Wed, November 15, 2017, 8:00am to 4:00pm
Location: 
Palmer Commons, 100 Washtenaw Ave

Join us for our 2nd annual symposium and workshop on the ethical, legal and social implications of learning health systems (ELSI-LHS).


This year's focus will be on data and knowledge sharing.


NOV 15 - 8:00 am - 4:00 pm: The symposium will lay out the ELSI of data sharing and translation in learning health systems that strive to be both FAIR (findable, accessible, interoperable, and reusable) and fair. The day will interactively address critical issues on data and knowledge sharing.


Speakers include John Wilbanks, Elizabeth Pike, Kenneth Goodman, Debra Mathews, Peter Embi, Peter Singleton, Warren Kibbe, Joon-Ho Yu and more to come!


Proceeds will be synthesized into draft recommendations for data and translation to practice & streamline future ELSI-LHS research.


We have issued a Call for Poster Abstracts to be included in the 2nd annual symposium. Poster displays should relate to the conference theme, "Data and Knowledge Sharing," and may relate to either ELSI or technical aspects of learning health systems. Abstracts and posters should be developed for an interdisciplinary audience including social scientists, informaticians, health care providers, and community members.


To submit an abstract, please go to: 2017 ELSI Abstract Submission
#elsilhs

CBSSM is a co-sponsor of this event.

Bioethics Grand Rounds - Dr. Michael Jibson

Wed, August 26, 2015, 12:00pm
Location: 
Ford Auditorium

This month's grand rounds features: Michael Jibson, MD, Psychiatry Department speaking about "Psychiatry, Law, and Society: Ethical and Legal Issues in Mental Health"

Lunch provided!

Please join us for a lively discussion of medical ethics. The Bioethics Grand Rounds is co-sponsored by the Center for Bioethics and Social Sciences in Medicine, the UMHS Adult and Pediatric Medical Ethics Committee, and the Program of Society and Medicine. This educational session is open to all faculty and staff and members of the public. CME credit is available. 

To meet ACCME requirements for Faculty Planner disclosure and Presenter Disclosure to participants of CME activities at UM, please be advised that the following faculty planner(s)/co-planner(s) and presenter have no personal financial relationships relevant to the activity listed below:
Planners: 

  • Andrew Shuman, MD
  • Christian Vercler, MD

Brian Zikmund-Fisher, PhD, gave a talk at the Small Group Meeting on Risk 2.0: Risk Perception and Communication Regarding Vaccination Decisions in the Age of Web 2.0 at Universitat Erfurt, Erfurt, Germany, on May 13, 2011.

Funded by the Department of Veterans Affairs

Funding Years: 2007-2012

Prostate cancer is the second leading cause of cancer related death among men in the United States, and accounts for 29% of all cancers diagnosed in men. Furthermore, approximately one in six men will be diagnosed with prostate cancer in their lifetime. Thus, 17% of male Veterans will be asked to make a decision about the treatment of their prostate cancer. The burden of this disease is further magnified when one considers that most patients will live for years following their diagnosis and with any adverse effects of therapy. Given that there have been no clinical trials showing that any prostate cancer treatment produces an increased likelihood of survival; men are asked to actively participate in treatment decisions. Previous research has revealed that men are often uninformed about their prostate cancer, particularly African American men and men with lower educational attainment. Thus, it is critical to develop and test decision aids that can help all men (especially men with low literacy skills) make an informed decision. The goal of the study was to compare the impact of a plain language decision aid (DA) to a conventional DA on prostate cancer patients’ decision making experience and communication with their physician.

PI(s): Angela Fagerlin, PhD and Peter A. Ubel, MD

Co-I(s): Khaled Hafez, MD; Bruce Ling, MD; Jeffrey Gingrich, MD; Sara Knight, PhD; Phillip Walther, MD; Margaret Holmes-Rovner, PhD; James Tulsky, MD; Stewart Alexander, PhD


 


 


 

 

What's in a Name? A Pregnancy Scenario (Nov-07)

Tell us how you'd respond to the results of a blood test for fetal chromosomal problems. And find out how your response compares with that of participants in a national survey.

Consider the following

Imagine that you are four months pregnant. You and your partner have talked with your doctor about prenatal screening tests for your fetus. Based on your family history and personal medical history, your doctor has told you that you're at low risk (2 in 1000) of having a fetus with chromosomal problems. Chromosomal problems include such conditions as Down Syndrome. In talking further with your doctor, you decide to have a routine blood test for chromosomal problems in your fetus. This test will help to give you a better estimate of the chance that your fetus would have a chromosomal problem.

Your doctor tells you that the results of this blood test have come back "abnormal." She clarifies that the blood test showed that your risk of fetal chromosomal problems is about 5 in 1000, which is higher than the number she had told you before the test. She next asks if you are interested in amniocentesis, a medical procedure in which a small amount of amniotic fluid is extracted from the amniotic sac surrounding the fetus. This procedure can tell you for sure whether or not the fetus has chromosomal problems. However, amniocentesis has its own risks. Your doctor explains that the risk of miscarriage as a result of amniocentesis may be as high as 5 in 1000.

In these circumstances would you be interested in having an amniocentesis performed?
  • Definitely No
  • Probably No
  • Probably Yes
  • Definitely Yes

How do your answers compare?

Many women decide to go ahead and have amniocentesis. There are two things in this scenario that could influence women's decisions about amniocentesis. First, the doctor described the test as "abnormal", a label that may increase worry about the possibility that the fetus would have a chromosomal problem. Second, the risk estimate of 5 in 1000 was higher than the original estimate of 2 in 1000, which also may increase concern.

CBDSM researchers, led by Brian Zikmund-Fisher, wanted to know how much influence labels such as "abnormal", "normal", "positive", or "negative" might have on people's decisions in situations like the one described above. To test this, they gave one group of women a scenario just like the one you read. In this scenario, the test results were described as either "abnormal" or "positive" before the risk estimate of 5 in 1000 was given. A second group of women read the same scenario, but in their scenario, the doctor presented only the numeric risk estimate, without any label.

Women whose test results were introduced using a qualitative label ("positive/abnormal") were significantly more worried - and significantly more likely to choose to have amniocentesis - than women who were told only the numeric risk estimate, without any label. Note that all of the women in this survey were told that they had the same final risk: 5 in 1000. The decision of the women in each group should have been the same, but adding that one qualitative label significantly changed what the women in the study decided to do.

Interestingly, the CBDSM researchers also found a reverse effect when test results were introduced with the labels "negative" or "normal." These labels tended to make women less worried and less likely to have amniocentesis than women in a comparison group. Again, these results show that adding a one-sentence introduction with a qualitative label could significantly change people's decisions.

Read the article:

Does labeling prenatal screening test results as negative or positive affect a woman's responses?
Zikmund-Fisher BJ, Fagerlin A, Keeton K, Ubel PA. American Journal of Obstetrics and Gynecology 2007;197(5):528.e1-528.e6.

Funded by Patient Centered Outcomes Research Institute.

Funding Years: 2012-2014.

While substantial progress has occurred recognizing community expertise in research, and involving communities in decisions about research aims and methods, community influence on research priorities remains limited. Building on experience with developing, testing and using the award-winning CHAT (Choosing Healthplans All Together) tool, and propelled by a current project that is developing and evaluating a tool to engage minority and underserved communities in setting priorities for clinical and translational research, we plan to develop and test a method to engage the public and patients in deliberations about patient-centered outcomes research (PCOR) priorities. The proposed study expands public input on research priorities beyond the limited settings of advisory boards and disease advocates in which much public engagement currently functions and contribute to a more just and equitable system of PCOR. Importantly, by evaluating the tool this project will also add to the body of knowledge about methods, processes and outcomes of community engagement. For more information, visit PCORI.

PI(s): Susan Goold

Co-I(s): Lawrence An, Ray De Vries, Jennifer Griggs,  Myra Kim

 

Tue, February 06, 2018

Naomi Laventhal was recently interviewed for a Smithsonian Magazine article entitled, "Now You Can Genetically Test Your Child For Disease Risks. Should You?"  In this article, studies by several CBSSM faculty and staff were highlighted.

Registration is now open for the April 25, 2017 CBSSM Research Colloquium & Bishop Lecture in Bioethics. This event is free and open to the public. Registration is encouraged, as it will help us to estimate numbers for catering and lunch. Please RSVP by April 18th.

The keynote address is the Bishop Lecture in Bioethics, an endowed lectureship made possible by a gift from the estate of Ronald C. and Nancy V. Bishop.  Norman Daniels, PhD will present the Bishop Lecture with a talk entitled: “Universal Access vs Universal Coverage: Two models of what we should aim for."

Norman Daniels, PhD is Mary B. Saltonstall Professor of Population Ethics and Professor of Ethics and Population Health in the Department of Global Health and Population at the Harvard School of Public Health.

Location: Great Lakes Room, Palmer Commons, 100 Washtenaw Ave, Ann Arbor, MI 48109
 
Click here to register for the Colloquium!

Click here for the Colloquium Schedule and Presentation Abstracts.

Liver Transplant Organ Quality Decision Aid: Would you consider a less than perfect liver? (Jan-16)

Imagine that you are a patient with end-stage liver disease and you are currently on the liver transplant waiting list.

Available donor livers are limited and vary in quality. Donor characteristics such as age and cause of death can make a difference between a 20% and a 40% rate of liver transplant (graft) failure by 3-years post-transplant.

Now imagine that you and your doctor are discussing the risks and benefits of a liver transplant and whether you might consider a “less than perfect” liver (with a higher risk for graft failure).  To help you in your decision making, you are provided with a decision aid to help you to consider the level of risk you would be willing to accept from a donated liver.

On the following page, consider an image representing your (pretend!) risk of dying or becoming too sick for a liver transplant within the next 3-months if you don’t get a transplant.

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