Dr. Fagerlin served as Co-Director of CBSSM from 2010-2015. She is currently Chair of the Department of Population Health Sciences at University of Utah School of Medicine and Research Scientist, Salt Lake City VA Center for Informatics Decision Enhancement and Surveillance (IDEAS)
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People in the U.S. make decisions about their health on a regular basis. For example,they are often asked to consider taking medication to treat common health problems, such as hypertension. But do patients have sufficient information to make these decisions? And what factors might influence the knowledge patients have, and their treatment decisions?
Consider this scenario:
Bob is a 52-year-old man who went to see his physician for a routine check-up. Bob’s doctor told him his cholesterol levels were slightly elevated and suggested cholesterol medication. Bob wondered how long he would have to take the medication, and whether there would be any side effects. Please answer the following two questions about cholesterol medications.
When people start taking cholesterol medications, how long is it usually recommended that they take them?
- less than 6 months
- 6-12 months
- 1-3 years
- for the rest of their lives
How do your answers compare?
Making an informed medical decision about whether to take cholesterol medications depends, at least in part, on understanding how long a medication should be taken and whether there are side effects. CBSSM investigators Angela Fagerlin, Mick Couper, and Brian Zikmund-Fisher recently published an article on patient knowledge from the DECISIONS study, a large survey of U.S. adults about common medical decisions. One main objective of the study was to determine adults’ knowledge about information relevant to common types of medication, screening, or surgery decisions they recently made. Data were collected from 2575 English-speaking adults aged 40 years and older who reported having discussed common medical decisions with a health care provider within the previous two years. Participants answered knowledge questions and rated the importance of their health care provider, family/friends, and the media as sources of information about common medical issues.
People taking cholesterol medications usually should take them for about 3 or more years, and perhaps even for the rest of their lives. A little more than 60% of the study respondents accurately identified the time to take cholesterol medications.
Many people have trouble with this question and do not know that muscle pain is the most commonly reported side effect of cholesterol medications. Only 17% of DECISIONS study respondents were able to answer this question correctly. About 1 in 5 respondents incorrectly identified liver problems as the most common side effect of cholesterol medications.
Overall, the investigators found that patient knowledge of key facts relevant to recently made medical decisions was often poor. In addition, knowledge varied widely across questions and decision contexts. For example, 78% of patients considering cataract surgery correctly estimated typical recovery time, compared to 29% of patients considering surgery for lower back pain or 39% of patients considering a knee or hip replacement. Similarly, in thinking about cancer screening tests, participants were more knowledgeable of facts about colorectal cancer screening than those who were asked about breast or prostate cancer. Respondents were consistently more knowledgeable on questions about blood pressure medication than cholesterol medication or antidepressants.
The impact of demographic characteristics and sources of information also varied substantially. For example, black respondents had lower knowledge than white respondents about cancer screening decisions and medication, even after controlling for other demographic factors. Researchers found no race differences for surgical decisions, however.
The authors concluded by noting that improving patient knowledge about risks, benefits, and characteristics of medical procedures is essential to support informed decision making.
For more information:
The Bishop Lectureship in Bioethics
Together with the Bishop endowment, CBSSM sponsors the Bishop Lecture in Bioethics. The Bishop Lecture in Bioethics was made possible by a generous gift from the estate of Ronald and Nancy Bishop, both graduates of the University of Michigan Medical School (Class of ‘44). The Bishop lecture typically serves as the keynote address for the CBSSM Research Colloquium. The Bishop Lecture selection committee is headed by Susan Goold, MD, MHSA, MA. Click here for more details.
CBSSM Research Colloquium
The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium features presentations focusing on bioethics and social sciences in medicine across multiple disciplines. Click here for more details.
CBSSM Seminar Series
Building upon the very successful “joint seminars” of past years sponsored by the Bioethics Program and the Center for Behavioral and Decision Sciences in Medicine (CBDSM), CBSSM hosts seminars on a bimonthly basis throughout the academic year, inviting investigators to present both developing and finished research topics. Click here for more details.
In addition to the Bishop Lecture in Bioethics, CBSSM has sponsored and co-sponsored a number of other events.
With support from the UMHS Office of Clinical Affairs and C.S. Mott Children’s Hospital and Von Voigtlander Women’s Hospital, CBSSM’s Program in Clinical Ethics sponsors the monthly Bioethics Grand Rounds, focusing on ethical issues arising in health care and medicine. This educational session is open to UMHS faculty and staff.
Film Screening & Moderated Discussion
CBSSM also sponsors film screenings and moderated panel discussions. In 2017, CBSSM sponsored a free film screening of "Concussion." The moderated panel included Ellen Arruda, PhD, Mechanical Engineering; Karen Kelly-Blake, PhD, Bioethics, MSU; & Matthew Lorincz, MD, PhD, Neurology. The moderator was Raymond De Vries, PhD.
In 2015, CBSSM co-sponsored a free film screening of "Still Alice." The panel included Nancy Barbas, MD and J. Scott Roberts, PHD and the moderator was Raymond De Vries, PhD. The event was co-sponsored by the Michigan Alzheimer's Disease Center.
Current Event Panels
In 2014, CBSSM co-sponsored the panel "Incidental Findings in Clinical Exome and Genome Sequencing: The Drama and the Data" featuring Robert C. Green, MD, MPH, Associate Professor of Medicine, Division of Genetics at Brigham and Women’s Hospital and Harvard Medical School, as the keynote speaker. The panel included Jeffrey W. Innis, MD, PhD, Morton S. and Henrietta K. Sellner Professor in Human Genetics and Director, Division of Pediatric Genetics, and Wendy R. Uhlmann, MS, CGC, Clinical Associate Professor, Department of Internal Medicine and Department of Human Genetics. The panel was moderated by Sharon L.R. Kardia, PhD, Director, Public Health Genetics Program and the Life Sciences and Society Program, School of Public Health, University of Michigan. This event was also co-sponsored by the Department of Human Genetics, Genetic Counseling Program and Life Sciences and Society, Department of Epidemiology.
In 2013, CBSSM sponsored the panel "What does the Supreme Court ruling on gene patents mean for public health?" The panel featured panelists, Rebecca Eisenberg, JD, Robert and Barbara Luciano Professor of Law; Sofia Merajver, MD, PhD, Professor, Department of Internal Medicine; and Shobita Parthasarathy, PhD, Associate Professor of Public Policy, Gerald R. Ford School of Public Policy. The panel was moderated by Edward Goldman, JD, Associate Professor, UM Department of ObGyn Women's Hospital and Adjunct Assistant Professor, Department of Health Management and Policy.
Each year, CBSSM sponsors one Decision Consortium speaker with a focus on health-related decision making. Decision Consortium, hosted by the Department of Psychology, is a University-wide distributed center for scholarship on decision making. Each session involves a vigorous discussion of new ideas and research on problems that have significant decision making elements. CBSSM-sponsored speakers included Kevin Volpp, MD, PhD, UPenn (2015), Karen Sepucha, PhD, Harvard (2013), and Ellen Peters, PhD, OSU (2012). In 2016, CBSSM will sponsor Lisa Schwartz, MD, MS and Steven Woloshin, MD, MS from the Dartmouth Institute.
The Waggoner Lecture
In November of 2010, CBSSM co-sponsored the 15th annual Waggoner Lecture, an annual event in honor of the late Dr. Raymond Waggoner, former chair of the Department of Psychiatry. The lecture was presented by Bernard Lo, MD, Director of the Program in Medical Ethics at the University of California-San Francisco, and was entitled, “Stem cells: Intractable ethical dilemmas or emerging agreement.”
In November 2011, CBSSM co-sponsored the Waggoner Lecture breakfast. The lecture was presented by Laura Roberts, MD, chair of the Department of Psychiatry and Behavioral Sciences at Stanford University School of Medicine, and was entitled, “Becoming a Physician: Stresses and Strengths of Physicians- in-Training.”
Deadly Medicine: Creating the Master Race
In 2012, in conjunction with Taubman Health Sciences Library and the UM Center for the History of Medicine, CBSSM co-sponsored the United States Holocaust Memorial Museum’s traveling exhibition, “Deadly Medicine: Creating the Master Race.” The exhibition illustrates how Nazi leadership enlisted people in professions traditionally charged with healing and the public good, to legitimize persecution, murder and, ultimately, genocide.
MICHR Research Education Symposium
In 2013, CBSSM co-sponsored the Michigan Institute for Clinical & Health Research (MICHR) Research Education Symposium, "Life at the Interface of Genomics and Clinical Care." The symposium included a series of talks on topics with implications for translational and clinical research. The keynote speaker was Dr. Ellen Wright Clayton, JD, MD, Rosalind E. Franklin Professor of Genetics and Health Policy; Craig-Weaver Professor of Pediatrics; Professor of Law; and Director, Center for Biomedical Ethics and Society, at Vanderbilt University. Dr. Wright Clayton’s topic was “Addressing Biomedical Ethics.”
This month's grand rounds features: Michael Jibson, MD, Psychiatry Department speaking about "Psychiatry, Law, and Society: Ethical and Legal Issues in Mental Health"
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:
- Andrew Shuman, MD
- Christian Vercler, MD
This seminar features Kirsten McCaffery, BSc (Hons), PhD; Professorial Research Fellow, School of Public Health; Sydney Medical School; NHMRC Career Development Fellow' Deputy Director, Public Health Section, Centre for Medical Psychology and Evidence based Decision Making (CeMPED)
Title: Communicating overdiagnosis in breast cancer screening: a randomised trial of a decision aid among women approaching target screening age.
Abstract: Mammography screening can reduce breast cancer mortality. However, most women are unaware that
inconsequential disease can also be detected by screening, leading to overdiagnosis and overtreatment. We aimed to investigate whether including information about overdiagnosis of breast cancer in a decision aid would help women aged around 50 years to make an informed choice about breast screening. Women (n=879) aged 48-50 were randomised to 1 of 2 decision aids. Both booklets presented evidence based information on key screening outcomes (breast cancer mortality benefit and false positives); 1 booklet also included overdiagnosis information. Study outcomes included informed choice (knowledge, attitudes and intentions) decisional conflict, anxiety, worry, anticipated regret and acceptability of the decision aid. Implications for the effective communication of overdiagnosis in screening and the development of optimal strategies for future information delivery will be discussed.
Are opinions on whether health care funding should be rationed dependent on an individual's perspective? Imagine that there are two regional health systems, each responsible for providing health care for one million people. The Director of each system has enough money to fund only one of two medical treatment programs. The health systems have the same limited budget and are the same in every way except for the treatment program that each Director decides to fund.
- Director who funded Program A (moderate shortness of breath)
- Director who funded Program B (severe shortness of breath)
- Both choices were equally good
- strongly agree
- strongly disagree
- strongly agree
- strongly disagree
How do your answers compare?
Before we analyze your responses to the scenario, we'd like to offer some background information about this area of research.
In an environment of scarce health care resources, policy makers and leaders of health care organizations often must make difficult choices about funding treatment programs. Researchers find out how people value different health states by asking questions like the ones you've answered. This area of research is called "person tradeoff elicitation."
The problem is that many people refuse to give a comparison value, saying that both choices are equal ("equivalence refusal") or saying that millions of people would have to be cured of one condition to be equal to the other treatment choice ("off-scale refusal"). Sometimes these responses are appropriate, but many times these responses seem inappropriate. Furthermore, the frequency of these decision refusals depends on how the questions are asked.
What were the specific goals of this research study?
In an article published by Laura J. Damschroder, Todd R. Roberts, Brian J. Zikmund-Fisher, and Peter A. Ubel (Medical Decision Making, May/June 2007), the authors explored whether people would be more willing to make health care tradeoffs if they were somewhat removed from the decision making role. As part of their study, the researchers asked people to comment on choices made by others, in this case, the Directors of two identical regional health systems. For this study, the researchers anticipated that asking participants to judge someone else's decision would make it easier for the participants to compare the benefit of curing two conditions that have a clear difference in severity. The researchers thought that adopting a perspective of judging someone else's decision might lessen the participants' feeling about making "tragic choices" between groups of patients and hence result in fewer refusals to choose. The researchers also hypothesized that respondents taking a non-decision-maker perspective would be more detached and would feel less outraged about the idea of having to ration medical treatments. As we will explain below, the researchers were surprised to learn that their hypotheses were wrong!
What did this research study find?
Some people surveyed in this study were asked to decide for themselves which of two treatment programs for shortness of breath should be funded. Others, like you, were asked which health system Director made the better decision about treatment programs for shortness of breath. Significantly, the respondents who had the evaluator perspective had nearly two times higher odds of giving an equivalence refusal�that is, saying that the decisions were equal. Why did this evaluator perspective fail to decrease these decision refusals? One possibility is that respondents did not feel as engaged in the decision. It's also possible that respondents felt that they were judging the Directors who made the decision rather than the decision itself. Or maybe respondents didn't want to second-guess the decisions of people they perceived as experts. The researchers predicted that people who had to make the decision about treatment themselves would be more outraged about the idea of rationing health care treatments. This prediction was also wrong! 69% of all respondents agreed that rationing is sometimes necessary, and yet 66% of all respondents also felt outraged about the idea of having to ration. The percentages were nearly the same for those deciding directly and those evaluating the decision of Directors of health care systems.
What conclusions did the researchers draw?
The researchers in this study concluded that perspective definitely matters in making hard choices about allocation of health care resources. They attempted to increase people's willingness to make tradeoffs by changing their perspective from decision maker to evaluator of someone else's decision. These attempts backfired. Contrary to the researchers' predictions, people were dramatically more likely to give equivalence refusals when they were assigned to a non-decision-maker perspective. The researchers also concluded that the degree of emotion aroused by health care rationing also plays a role in people's willingness to make tradeoffs.
So, how does your response to the Directors' decision in the shortness-of-breath scenario compare with the responses of the people surveyed for this study?
If you responded that the choices of both Directors were equal, you were not alone! Overall, with this scenario and related ones, 32% of respondents in the published study refused to make the tradeoff. These were the equivalence refusals. In comparison, 21% of respondents in the study who were asked to decide themselves between two patient groups gave an equivalence refusal.
If you made a choice of Directors in the shortness-of-breath scenario, how does your numerical answer compare with the responses of people surveyed for this study?
In the study, 15% of respondents gave a number of one million or more as the point at which the Directors' decisions about the two treatment programs would be equal. These were the off-scale refusals. In comparison, 19% of respondents in the study who were asked to decide themselves about the two programs gave an off-scale refusal.
What about your level of outrage?
In the study, 69% of respondents agreed that rationing of health care treatment is sometimes necessary, but 66% also felt outraged about the idea of having to ration. These attitudes were the same whether the respondents were assigned an evaluator perspective (as you were) or a direct decision maker perspective.
Read the article:
Why people refuse to make tradeoffs in person tradeoff elicitations: A matter of perspective?
Damschroder LJ, Roberts TR, Zikmund-Fisher BJ, Ubel PA. Medical Decision Making 2007;27:266-288.
Brian Zikmund-Fisher, PhD, a CBSSM investigator and Director of the CBSSM Internet Survey lab, is the principal investigator on an Investigator Initiated Research award from the Foundation for Informed Medical Decision Making that began in October 2008. The grant, entitled "Learning by Doing: Improving Risk Communication Through Active Processing of Interactive Pictographs," will fund the development and testing of of Flash-based interactive risk graphics that research participants or patients can use to visually demonstrate how likely they believe some event is to occur. Dr. Zikmund-Fisher hopes that people who create risk graphics themselves will have a better intuitive understanding of risk than people who just view static images. Co-investigators on the award include Angela Fagerlin, Peter A. Ubel, and Amanda Dillard.
How do your risk estimate and your actual level of risk impact your anxiety? Please answer the following question to the best of your ability:
What is the chance that the average woman will develop breast cancer in her lifetime?
The average lifetime chance of developing breast cancer is actually 13%.
How do your answers compare?
Making a risk estimate can change the feel of the actual risk
CBDSM investigators Angela Fagerlin, Brian Zikmund-Fisher, and Peter Ubel designed a study to test whether people react differently to risk information after they have been asked to estimate the risks. In this study, half the sample first estimated the average woman's risk of breast cancer (just as you did previously), while the other half made no such estimate. All subjects were then shown the actual risk information and indicated how the risk made them feel and gave their impression of the size of the risk. The graph below shows what they found:
As shown in the graph above, subjects who first made an estimated risk reported significantly more relief than those in the no estimate group. In contrast, subjects in the no estimate group showed significantly greater anxiety. Also, women in the estimate group tended to view the risk as low, whereas those in the no estimate group tended to view the risk as high.
So what's responsible for these findings? On average, those in the estimate group guessed that 46% of women will develop breast cancer at some point in their lives, which is a fairly large overestimate of the actual risk. It appears, then, that this overestimate makes the 13% figure feel relatively low, leading to a sense of relief when subjects find the risk isn't as bad as they had previously thought.
Why this finding is important
Clinical practice implications - The current research suggests that clinicians need to be very deliberate but very cautious in how they communicate risk information to their patients. These results argue that a physician should consider whether a person is likely to over-estimate their risk and whether they have an unreasonably high fear of cancer before having them make a risk estimation. For the average patient who would overestimate their risk, making a risk estimation may be harmful, leading them to be too relieved by the actual risk figure to take appropriate actions. On the other hand, if a patient has an unreasonably high fear of cancer, having them make such an estimate may actually be instrumental in decreasing their anxiety. Physicians may want to subtly inquire whether their patient is worried about her cancer risk or if she has any family history of cancer to address the latter type of patient.
Research implications - Many studies in cancer risk communication literature have asked participants at baseline about their perceived risk of developing specific cancers. Researchers then implement an intervention to "correct" baseline risk estimates. The current results suggest that measuring risk perceptions pre-intervention will influence people's subsequent reactions, making it difficult to discern whether it was the intervention that changed their attitudes or the pre-intervention risk estimate. Researchers testing out such interventions need to proceed with caution, and may need to add research arms of people who do not receive such pre-tests.
For more details: Fagerlin A, Zikmund-Fisher BJ, Ubel PA. How making a risk estimate can change the feel of that risk: shifting attitudes toward breast cancer risk in a general public survey. Patient Educ Couns. 2005 Jun;57(3):294-9.