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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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.
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
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 Patient-Centered Outcomes Research Institute (PCORI)
Funding Years: 2014 - 2016.
Obesity is increasingly considered among the most important public health problems of our times. Bariatric surgery is arguably the only treatment that has proven effective in producing long-term weight loss for patients with morbid obesity. Bariatric surgery also results in resolution of obesity related comorbid conditions, improvements in quality of life, and increased survival.
There are currently four different bariatric surgical procedures in use: adjustable gastric banding, gastric bypass, sleeve gastrectomy, and duodenal switch. Bariatric surgery is considered a highly preference sensitive medical issue. Existing decision aids in bariatric surgery are limited in that they provide information about the average comparative risks and benefits of the treatment options, but do not provide customized estimates of the risks and benefits of the different procedures for individual patients. As a result of these draw-backs, decision aids are not frequently used in making treatment decisions in bariatric surgery.
Our proposal is highly innovative in that our decision support tool integrates data from a large clinical registry with individual patient data to provide patients with real-time, customized, accurate information regarding the risks and benefits of the treatment options to better inform decision making. This tool will be continuously updated to ensure that the data on risks and benefits that it provides are accurate and current. Our tool also provides information about other attributes of the treatment options that bariatric surgery patients and other relevant stakeholders feel are important for patients to consider in deciding whether and what type of bariatric surgery to have.
The proposed research promotes shared medical decision making for patients who are considering bariatric surgery for the treatment of morbid obesity. If our intervention proves effective, it will result in improved decision quality and outcomes of care for patients. It may also result in improved efficiency of care to the extent that it serves to augment or guide communication between the patient and physician to promote shared medical decision-making.
PI(s): Nancy Birkmeyer
Co-I(s): Lawrence An, Mousumi Banerjee, Angela Fagerlin, Sarah Hawley, Edward Norton, Lisa Prosser,
Funded by Patient-Centered Outcomes Research Institute (PCORI).
Funding Years: 2013-2016.
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