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Funded by Health and Human Services, Department of-National Institutes of Health

Funding Years: 2014 - 2016

Nearly 800,000 people suffer a stroke each year in the US and the cost of stroke reaches $105 billion annually. Stroke is also a leading cause of disability in the US. Post-stroke disability is dramatically reduced among patients who receive tissue plasminogen activator (tPA). For clinical effectiveness, tPA must be administered within 4.5 hours from the start of stroke symptoms. Unfortunately, tPA is vastly underutilized with about 3% of stroke patients receiving tPA. The majority of patients fail to receive tPA because they arrive to the hospital after the treatment time window has elapsed (this barrier to tPA administration is known as prehospital delay). Researchers have shown that if 911 were called at the time of stroke onset, over 28% of all stroke patients would receive tPA. Therefore, translational research to increase stroke preparedness (defined as the ability to recognize stroke warning signs and call 911 immediately) is urgently needed. However, the field of stroke preparedness is severely limited by the absence of intermediate end points to test behavioral interventions. Before embarking on large scale, expensive, community intervention trials, phase 2 studies using intermediate end points are needed. An intermediate end point allows for testing of several interventions (phase 2 studies) before deciding on the most promising intervention that warrants phase 3 testing. Intermediate end points also facilitate testing interventions for selected populations such as high risk groups like racial/ethnic minorities or those with low socioeconomic status, rather than an entire community. In this project, we will develop and validate a psychometrically rigorous test of stroke preparedness using video vignettes - the video stroke action test (video-STAT). Because of the increased burden of stroke among African Americans, Hispanics and those with low socioeconomic status, we will oversample from these groups in development and validating of the video-STAT. At completion of this study, an innovative stroke preparedness intermediate end point will be created and critical steps toward validating it will be performed. As the US population ages, stroke will only claim more victims and at greater expense to individuals, families and society. It is critical that we rapidly develop rigorous scientific interventions that increase delivery of acute stroke therapy to decrease post-stroke disability and reduce the enormous impact of this devastating disease.

PI(s): Lesli Skolarus, Lewis Morgenstern

Co-I(s): Brisa Sanchez

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.

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

Funded by National Institutes of Health.

Funding Years: 2013-2016

With the growing importance of biobank research, concerns have been raised about how to protect the interests of donors. The current ethics framework mainly focuses on protecting against risks to donors' welfare and to their privacy. However, there has been little systematic empirical, normative, or policy focus on the non-welfare interests of donors, i.e., concerns about the moral, societal, or religious implications of research using their donation that may affect their willingness to donate. Although important theoretical discussions, mentions in commission reports, and insights from several qualitative studies have drawn attention to the serious nature of these interests, we lack important data for policy development: (1) systematic data on the nature and extent of potential impact of non-welfare interests and (2) high quality (i.e., informed and considered) policy preferences of the public addressing how to balance these non-welfare interests with the promise of biobank research. Our project will fill these gaps with two complementary projects. First, a national survey will assess the contours of the potential impact of non-welfare interests on biobank research, by addressing: what kinds of non-welfare interests substantially affect willingness to donate biological materials?; how common are these interests?; how much do donors want to know about the potential involvement of such non-welfare interests when donating?; how are non-welfare interests affected by such factors as race or ethnicity, socioeconomic status, trust in medical research, religious beliefs and practice, or political orientation? Second, we will obtain considered, informed judgments of the public regarding how to handle the tension between the public good of biobanks and the conflicting non-welfare interests of potential donors, using a democratic deliberation method in which subjects will attend an all-day education and peer deliberation session. The impact of the deliberation will be validated using a randomized, experimental design. In summary, despite the ethical significance of non-welfare interests for biobank research, there is a paucity of systematic data regarding both their potential impact and the potential policy solutions. This project will provide a highly generalizable assessment of the potential impact of non-welfare interests as well as policy recommendations based on informed, deliberative opinions of the general public. Visit the NIH website for more information.

PI(s): Tom Tomlinson, Raymond De Vries 

Co-I(s): Karen Kelly-Blake, H. Myra Kim, Blake J Roessler 

The novelty of risk and vaccination intentions (May-12)

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. 

2016 Bishop Lecture featuring William Dale, MD, PhD

Wed, April 27, 2016, 10:30am
Founders Room, Alumni Center, 200 Fletcher St., Ann Arbor, MI

The 2016 Bishop Lecture in Bioethics was presented by William Dale, MD, PhD, Associate Professor of Medicine; Chief, Section of Geriatrics & Palliative Medicine; and Director, Specialized Oncology Care & Research in the Elderly (SOCARE) Clinic at the University of Chicago. Dr. Dale presented, "Why Do We So Often Overtreat, Undertreat, and Mistreat Older Adults with Cancer?" The Bishop Lecture served as the keynote address during the CBSSM Research Colloquium.

Abstract: The US health care system is being confronted with the consequences of aging as the baby-boomers join Social Security and Medicare, with cancer care front-and-center.  Two recent IOM reports, Retooling for an Aging America and Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, highlight these intersecting areas.  Delivering high quality care for older adults with cancer, at an affordable cost, in a transforming health delivery system will be addressed from a personal, clinical, and policy perspective.

William Dale, MD, PhD, is an Associate Professor of Medicine and the Section Chief of Geriatrics & Palliative Medicine at the University of Chicago, with a secondary appointment in Hematology/Oncology.  He is a board-certified internist and geriatrician with a doctorate in health policy. He completed his medical and graduate school training at the University of Chicago, did his residency in internal medicine and fellowship in geriatrics at the University of Pittsburgh, and then returned to the University of Chicago.

Dr. Dale has devoted his career to the care of older adults with cancer.  In 2006, He established, and now co-directs, the Specialized Oncology Care & Research in the Elderly (SOCARE) Clinic at the University of Chicago. SOCARE offers interdisciplinary, individualized, and integrated treatment for older cancer patients. It provides a special environment for addressing the issues relevant to older cancer patients and their loved ones and integrating research into this special clinic environment.

Dr. Dale is an international speaker who has published over 50 papers in top journals on medical decision making, behavioral economics, quality of life, and frailty assessment in older adults, particularly those with cancer. He and his team have shown the important role emotions like anxiety play in medical decisions for older adults. He has received grants from the National Institute on Aging (NIA), National Cancer Institute (NCI), American Cancer Society, and the Foundation of Informed Medical Decision Making. With NIH funding, he has co-led a series of national conferences with international experts on geriatric-oncology.  He is a co-investigator for the National Social Life, Health, and Aging Project (NSHAP), a survey and biomeasure collection on the health, well-being, and social life of over 3,000 older adults.

  • Click here for the video recording of the 2016 Bishop Lecture.

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

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 Patient-Centered Outcomes Research Institute (PCORI)

Funding Years: 2014 - 2018

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/Amir Ghaferi

Co-I(s): Lawrence An, Mousumi Banerjee, Angela Fagerlin, Sarah Hawley, Edward Norton, Lisa Prosser