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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


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 


Funded by the Department of Veterans Affairs.

Funding Years: 2012-2013.

Diabetes is a complex, chronic disease encompassing many domains of treatment. VHA and others have created diabetes guidelines to help support providers and patients in making choices about optimal treatment approaches. However, most guidelines are broad in nature, and offer relatively little guidance on how to personalize care in order to maximize treatment benefits, minimize the intensity and negative effects of treatment, and best align with individual treatment preferences. 

We will test the effectiveness of a personalized decision support program. Our long term goals are:

  • To test and implement a decision support program, including decision coaching supported by an interactive, personalized decision support tool, in clinical practice via our Patient-Aligned Care Team (PACT) laboratory.
  • To assess the impact of personalized decision support on patient-centeredness, patient satisfaction, and the effectiveness of risk communication and treatment decision making.

We propose an interventional study to examine the effectiveness of personalized decision support. The intervention will consist of two key components: a decision coach  and a personalized diabetes decision support tool. The decision support tool has mostly been developed via AHRQ and local pilot funding mechanisms, and is informed by personalized estimation of treatment benefits for blood glucose, blood pressure, and lipid treatment based on extensive modeling work done by our investigative team. The personalized benefit information is communicated through graphical risk communication methods (pictographs).  

PI(s): Angela Fagerlin 

Thu, February 01, 2018

Breast cancer patients face complex decisions about their treatment. Sarah Hawley, Reshma Jagsi, and colleagues developed an interactive online tool to help patients understand their treatment options. In a study published in the Journal of Clinical Oncology, they found that patients using the interactive tool had higher knowledge and felt more informed about options and felt better prepared to make a treatment choice.

Parents' decision-making about medicating infants (Jul-13)

Imagine that you are the parent of a 1-month-old infant. Your infant spits up a lot. Often there is so much spit-up that you are amazed that there is anything left in your infant’s stomach.  After spitting-up, your infant cries a lot. The crying and spitting seems especially bad after eating. But sometimes it seems like she is uncomfortable most of the time. It seems like there is nothing that you can do to stop the crying or to soothe your infant. You are worried that an infant who is this uncomfortable, and that spits up this much, might not be healthy. So, you decided to take your infant to the doctor to be checked.

After listening to your story and examining your infant, your doctor says, “You infant has something called GERD, or Gastroesophageal Reflux Disease. GERD happens when infants have a weak valve at the entrance to their stomach and, as a result, food and acid from the stomach can travel back up toward the infant’s mouth. When this happens, the infant may spit-up, and the acid in the spit-up may make her uncomfortable, and cause her to cry. Some doctors prescribe a medication that is often used to treat infants with GERD. Most infants grow out of GERD on their own, but medication is an option if you want it. However, studies have shown that this medicine probably doesn’t do anything to help improve symptoms in babies with GERD. This is the same medication that is taken by adults who have bothersome heartburn. This medication is generally considered safe for infants, and rarely causes serious side effects. I’ll give you this prescription and leave it up to you to decide whether or not you want to give it to your infant.”

Funded by Health and Human Services, Department of-Agency for Health Care Research and Quality

Funding Years: 2013 - 2016.

Both patient-centered care approaches and health information technology advances (e.g. patient portals to electronic health records) are increasing how often patients are directly presented with medical test results that identify health concerns, monitor health status, or predict future health risk. In principle, such data enable patients to actively mange health conditions and participate in care decisions. In practice, availability of data may not result in understanding, as test results are often presented in confusing formats with little context. Many patients, especially those with lower numeracy skills (i.e., poor ability to draw meaning from numbers), may be unable to interpret test outcome data and use it in decision making. For these patients, knowing test results or risk estimates does not ensure that they understand what those numbers imply or what actions they need to consider. Such data can be, quite literally, meaning-less, and patients are likely ignore such information in decision making even when they are fully informed.
We propose to draw on research methodologies from design science, decision psychology, human-computer interaction, and health communication and integrate them into a single, highly innovative research process that will tackle the problem of how best to present Hemoglobin A1c values and similar test results to patients with diabetes as an exemplar of the larger problem of meaningless medical test data. We will (a) define the problem space from multiple perspectives, (b) clarify what we can hope to achieve when we present diabetic patients with their test results, and (c) and identify possible approaches for improving data meaningfulness. Our iterative research approach involves three phases. In Phase 1, we will use intensive deep dive design sessions (a methodology borrowed from design science) with a multidisciplinary team combining experts in health communication and human-computer interaction with both practicing clinicians and expert patients. These sessions will identify discrepancies between patient needs for test result data and the formats in which such data are provided to patients, identify when low numeracy skills will be a barrier to patient interpretation and use of such data, and brainstorm potential solution concepts. In Phase 2, we will conduct rigorous comparative evaluations of proposed designs using (a) user-experience design sessions, and (b) an iterative sequence of large-sample, multi-factorial, randomized-controlled experiments in order to identify what formats make test data most meaningful and useful for facilitating informed patient decisions about medical care. In Phase 3, we will take our identified test results communication best practices and develop, program, and disseminate a test results display generator application that will be able to be integrated with existing electronic health record systems and other applications and will be made available to patients via a freely available website.

PI(s): Brian Zikmund-Fisher

Co-I(s): Angela Fagerlin, Reshma Jagsi, Predrag Klasnja, Kenneth M. Langa, Beth A. Tarini,, Sandeep Vijan

Funded by Health and Human Services, Department of-Agency for Health Care Research and Quality

Funding Years: 2014-2016

This grant aims to engage communities, particularly underserved communities, in informed deliberations about current and potential changes to Medicaid eligibility, coverage, and cost-sharing. Building on community-based research partnerships state-wide, we will convene a Steering Committee including community leaders, researchers, decision makers in private healthplans and the Michigan Department of Community Health (MDCH) and other stakeholders. We will adapt an innovative, award-winning web-based simulation exercise, CHAT (CHoosing All Together, in which individuals and groups make tradeoffs between competing needs for limited resources. Options in Medicaid-CHAT may include variations in covered benefits; out-of-pocket spending; population health and public health programs; rewards for healthy behaviors; and quality improvement activities. We will facilitate deliberations throughout the state, disproportionately sampling medically underserved communities and balancing locale (urban, suburban, rural and remote rural) and sociodemographic characteristics, ensuring inclusion of particular perspectives, e.g., those with chronic illness and those who are or will soon be eligible for Medicaid coverage or dually eligible.

We will prepare policy briefs describing the views of Michigan citizens about Medicaid eligibility, coverage, and cost-sharing and implications for policy. We aim to communicate Medicaid priorities of communities and the policy implications to state leaders, community leaders, insurers, and other stakeholders. We will examine the impact of public engagement on participants’ knowledge, attitudes, and priorities, and explore the impact on policy decisions.

We will also evaluate the effect of deliberations including a key element of deliberative procedures – representation.

PI(s): Susan Goold, MD, MHSA, MA

Co-I(s): A. Mark Fendrick, MD; Hyungjin Kim, PhD; Richard Lichtenstein, MD

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.

The Diabetes Lobby (Dec-09)

Tell us what you think about certain public policies designed to reduce the incidence of diabetes in the US.

Please read this hypothetical news article and then answer a few questions at the end.

People with Diabetes Lobby Congress This Week

Washington, March 28 – About 1000 patients with type 2 diabetes (also commonly known as adult-onset or non-insulin-dependent diabetes) have converged here as advocates for the American Diabetes Association (ADA). They will be meeting with their members of Congress to discuss their condition and advocate for federal policies to address their disease. In addition, they will hold a rally on Thursday of this week on the National Monument grounds, to attract popular attention to their disease.
According to the Centers for Disease Control and Prevention, nearly 21 million Americans have diabetes, but one-third of these people do not yet know they have the disease. More than 90% of people with diabetes have type 2 diabetes, a form of diabetes which typically emerges when people are adults but which may develop during childhood. The number of people diagnosed with type 2 diabetes has been increasing every year. There were over 1 million new cases of diabetes diagnosed in 2005 among adults. Researchers believe that the conditions in the neighborhoods where people live increase their chances of getting type 2 diabetes. Rates of diabetes are highest among people living in poor neighborhoods.
People with type 2 diabetes develop a problem with the way their body secretes or responds to insulin, a hormone that regulates blood glucose levels. As a result, they have elevated blood sugar levels, which they must check multiple times per day and monitor their food intake. Researchers are working hard to understand more about what causes type 2 diabetes. Diabetes expert Dr. Howard Smith says, "People who live in neighborhoods where the majority of stores sell food with high calories and low nutritional value, such as fast food restaurants or convenience stores, are much more likely to develop diabetes." Several other scientific studies have supported the idea that people’s neighborhoods, including not having convenient or safe places to exercise, and being exposed to many advertisements selling high-calorie foods, are associated with the development of diabetes.
If left untreated, people with diabetes can become blind, have kidney damage, lose their limbs, or die. Physicians, health plans, employers, and policymakers are considering new ways to prevent diabetes, help patients manage their diabetes, and reduce this deadly epidemic. It is expected that the U.S. Senate Committee on Health, Education, and Labor will consider several bills about diabetes in the upcoming session of Congress.
Some people with diabetes check their blood sugar with a device called a glucometer.
Having read this news article, please tell us if you agree with the following policies:
The government should impose higher taxes on food high in calories and fat, like it does for cigarettes.
  • strongly disagree
  • disagree
  • neutral
  • agree
  • strongly agree
The government should provide financial incentives to encourage grocery stores to locate in areas where there are few.
  • strongly disagree
  • disagree
  • neutral
  • agree
  • strongly agree
The government should regulate advertisements for junk food like it does for cigarettes and alcohol.
  • strongly disagree
  • disagree
  • neutral
  • agree
  • strongly agree

Generally speaking, do you usually think of yourself as a Republican, a Democrat, an Independent, or what?

  • Strong Democrat
  • Not so strong Democrat
  • Independent, close to Democrat
  • Independent
  • Independent, close to Republican
  • Not so strong Republican
  • Strong Republican
  • Don't know, haven't thought much about it

How you answered: 

Researchers affiliated with CBDSM and the School of Public Health have found that "Americans' opinions about health policy are polarized on political partisan lines. Democrats and Republicans differ in the ways that they receive and react to messages about the social determinants of health."

In the study, lead author Sarah Gollust, PhD, randomly assigned participants to read one of four hypothetical news articles about type 2 diabetes. Diabetes was used as an example of a common health issue that is widely debated and that is known to have multiple contributing factors, including genetic predisposition, behavioral choices, and social determinants (such as income or neighborhood environments).

The articles were identical except for the causal frame embedded in the text. The article that you read in this Decision of the Month presented social determinants as a cause for type 2 diabetes. Other versions of the article presented genetic predisposition or behavioral choices as a cause for type 2 diabetes, and one version had no causal language.

Dr. Gollust then asked the study participants their views of seven nonmedical governmental policies related to the environmental, neighborhood, or economic determinants of diabetes:

  • bans on fast food concessions in public schools
  • incentives for grocery stores to establish locations where there are currently few
  • bans on trans fat in restaurants
  • government investment in parks
  • regulating junk food advertisements
  • imposing taxes on junk foods
  • subsidizing the costs of healthy food

Dr. Gollust also asked participants their political party identification and a number of other self-reported characteristics.

The most dramatic finding of this study was that the news story with the social determinants as a cause for type 2 diabetes had significantly different effects on the policy views of participants, depending on whether they identified themselves as Democrats or Republicans. After reading the social determinants article, Democrats expressed a higher level of support for the proposed public health policies. Republicans expressed a lower level of support for the proposed public health policies. This effect occurred only in the group of participants who were randomly assigned to read the version of the news article with social determinants given as a cause for type 2 diabetes. Dr. Gollust summarizes: "Exposure to the social determinants message produced a divergence of opinion by political party, with Democrats and Republicans differing in their opinions by nearly 0.5 units of the 5-point scale."

The study suggests several possible explanations for these results:

"First, the social determinants media frame may have presumed a liberal worldview to which the Republican study participants disagreed or found factually erroneous (ie, not credible), but with which Democrats felt more comfortable or found more familiar. . . Second, media consumption is becoming increasingly polarized by party identification, and . . . the social determinants message may have appeared particularly biased to Republicans. . .Third, the social determinants frame may have primed, or activated, study participants' underlying attitudes about the social group highlighted in the news article. . . Fourth, participants' party identification likely serves as proxy for . . . values held regarding personal versus social responsibility for health."

Dr. Gollust and her colleagues conclude that if public health advocates want to mobilize the American public to support certain health policies, a segmented communication approach may be needed. Some subgroups of Americans will not find a message about social determinants credible. These subgroups value personal responsibility and find social determinants antagonistic to their worldview. To avoid triggering immediate resistance by these citizens to information about social determinants of health, public health advocates may consider the use of information about individual behavioral factors in educational materials, while working to build public familiarity with and acceptance of research data on social determinants.

For more details about this study:

Gollust SE, Lantz PM, Ubel PA, The polarizing effect of news media messages about the social determinants of health, Am J Public Health 2009, 99:2160-2167.


Funded by the Informed Medical Decision Making Foundation

Funding Years: 2010-2012

The overall long-term goal of this research program is to develop values clarification exercises that improve decision quality.  The research funded by this grant aims to establish the feasibility of the development and evaluation of a dynamic interactive tool that explicitly encourages values exploration and clarification.  For this study, values exploration means that patients will be encouraged to “try on” different ideas, see immediate and dynamic visual feedback, adjust and re-adjust their values, and save settings at multiple time points in order to recall and compare thoughts and feelings.  It is hypothesized that by explicitly supporting a potentially circuitous path of values exploration, the resulting approach will be more reflective of the intuitive processes that people follow to arrive at states of greater clarity.

Angela Fagerlin (PI)