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Funded by: Michigan Department of Health & Human Services and Centers for Medicare & Medicaid Services

Funding Years: 2016-2017

 

PI: John Ayanian

CO(s): Susan Goold, MD. MHSA. MA & Jeffrey Kullgreen, MS. MD. MPH.

Supporting information for: 2014 CBSSM Research Colloquium and Bishop Lecture (Myra Christopher)

 

Andrew G. Shuman, MD, Assistant Professor, Department of Otolaryngology, University of Michigan

"When Not to Operate: The Dilemma of Surgical Unresectability"

One of the most anguishing choices a surgeon can make is deciding not to embark upon an operation because a tumor is deemed unresectable.  Despite the widespread acceptance of patient autonomy and transparency in medical practice, there remains an unstated paternalism “behind the mask,” within the confines of the operating room.  The concept of surgical unresectability derives from a complex combination of tumor factors, patient factors, and surgeon factors.  In many cases, these decisions are intensely personal and subjective, with disagreements even among surgeons in the same field.  There is a risk that the voice of the patient may be lost in making these decisions, as surgeons weigh these intangible variables in ways that may be incommunicable.  However, the consequences of proceeding with an operation unlikely to achieve its intended outcome may be similarly terrifying.  In this presentation, a cancer surgeon and reconstructive surgeon will discuss these dilemmas from multiple perspectives using real-life case examples from their practice.  We will collectively try to tease out the inherent biases informing such decisions from the standpoint of doctors, patients, and clinical ethicists.  The theoretical underpinnings of the authority of surgical judgment will be explored, noting that pursuing goods internal to the practice of surgery requires such decisions, and asking whether Polanyi’s concept of tacit knowledge explains (or even permits) a degree of paternalism.  

Phoebe Danziger, BA, MD expected May 2014
 
"Beliefs, Biases, and Ethical Dilemmas in the Perinatal Counseling and Treatment of Severe Kidney Anomalies"
 

Anomalies of the kidney and urinary tract are the most common prenatally diagnosed fetal structural abnormalities, and are a major cause of end-stage kidney disease in children. Severe, prenatally diagnosed cases present a number of unique ethical issues with respect to the care of the pregnant woman, fetus, and neonate. We will use a case-based approach to explore these issues in the context of prenatal counseling, and in the neonatal period. On a case-by-case basis, efforts are made antenatally to coordinate counseling from appropriate consultants such as maternal-fetal medicine, neonatology, and pediatric urology and nephrology. We argue, however, that significant differences exist both between individual physicians and between subspecialties more broadly with regard to beliefs about prognosis, therapeutic interventions available, and appropriate utilization of palliative versus life-prolonging options. Unlike for other high-risk perinatal conditions such as extreme prematurity, no guidelines or standardized interprofessional processes exist for the provision of coordinated, timely, and non-directive care to these patients. This has implications for choices made regarding prenatal care, resuscitation efforts at birth, and utilization of palliative and life-prolonging care options, and we argue that the implicit biases and differences in both counseling and practice must be explicitly addressed and considered in order to facilitate more effective counseling for families facing these diagnoses. We will discuss the prenatal use of the term “lethal pulmonary hypoplasia,” a term that implies an unequivocal outcome but is a tissue-based diagnosis that can only be made after birth, not on the basis of obstetric ultrasound. We will also discuss the strikingly different rates of utilization of and attitudes towards dialysis initiated in the neonatal period, both between individual care providers and between institutions. 

 
Kathryn L. Moseley, MD, MPH, Assistant Professor, Pediatrics and Communicable Diseases, University of Michigan
 
"Electronic Medical Records: Challenges for Clinical Ethics Consultation"
 
Electronic medical records (EMRs) are rapidly replacing their paper counterparts. Their advantages include readability, access, organization, and comprehensiveness. The qualities that make EMRs so attractive also create new challenges for the clinical ethics consultant and the consultation process. This transition from a handwritten record of examinations and diagnoses that resided in close proximity to the patient to an electronic record that can be read remotely creates a number of concerns uniquely problematic for ethics consultation.  
We identify 4 hazards that EMRs present to ethics consultants:
Accessing significant medical information remotely, before face-to-face contact, can bias the consultant and lead to the premature development of conclusions/recommendations.
The ability to access medical information remotely can tempt the consultant to be less thorough in face-to-face information-gathering.
The paucity of nuanced information about the patient/family social and emotional situation and the content of patient/family meetings can misinform and mislead the consultant.
Remotely accessing information can delay communication with the patient and family, potentially undermining their trust in the objectivity of the ethics consultation process.
We propose the following 3 recommendations for training programs and ethics committee members to begin to address the concerns above:
1) Training programs for ethics consultants should emphasize the importance of face-to-face encounters with all stakeholders as soon as possible after receiving a consult.  Telephone only consults should be discouraged.
2) Hospital ethics committees should create procedures and processes that encourage and support face-to-face information gathering.
3) New consultants should be educated about the limitations of the EMR, especially as an accurate source of information about the emotional or social situation of the patient/family and the content of patient/family meetings.
 
 
Helen Morgan, MD,  Department of Obstetrics and Gynecology, University of Michigan
 
"Academic Integrity in the Pre-Health Undergraduate Experience"
 
Introduction: There is evidence that academic misconduct early in a student’s career can initiate a continuum of later unethical behaviors.  Multiple studies have reported that the best predictor of whether a student will cheat in medical school is whether they had a history of cheating in college.   Cheating in medical school has been found to be the strongest predictor of disciplinary action by state medical boards for practicing physicians. There is a paucity of data on perceptions of academic integrity in pre-health students. Methods: In the fall of 2013, we administered a survey on academic integrity to first-year pre-health students in the Health Science Scholars Program.  The curriculum for their course included sessions on academic integrity in the health care profession, and in the pre-health experience.  Follow-up assessments in the spring of 2014 included a re-administration of the same integrity survey, as well as a survey on students’ perceptions of what pressures and justifications lead to cheating behaviors. Results:  In the fall, students reported that 7.5% had cheated already in college, 26.2% had witnessed cheating in college, and 59.4% believed that academic misconduct was a problem at the University of Michigan.  In the spring, the percent of students who reported cheating in college was unchanged at 7.1%, and there was an increase in the number of students who reported witnessing cheating in college at 40.8% (p=0.027).    Students cited admissions requirements for graduate programs as the highest sources of pressure to cheat. Conclusion: This pilot data demonstrates that there is a need for curriculum development that could potentially prevent academic misconduct in vulnerable pre-health students.
 
 
Tanner Caverly, MD, MPH, Health Services Research Fellow, Ann Arbor VA Medical Center and Clinical Lecturer, University of Michigan
 
"How transparent are cancer screening & prevention guidelines about the benefits and harms of what they recommend?"
 
Transparent risk information -- that is, presenting absolute risks on both benefits and harms -- is essential for medical decision making. Without this information clinicians and policy-makers cannot know how much an intervention helps, whether the potential benefit is worth the potential harms, or whether one service is more helpful than another service. We recently did a structured review of clinical practice guidelines and two widely-used clinical resources. We found that few recommendations are accompanied by transparent risk information on the benefits and harms of the recommended cancer prevention service (only 23%). This talk focuses on how risk information WAS presented and the implications of our findings.
 
 
Susan D. Goold, MD, MHSA, MA , Professor of Internal Medicine and Health Management and Policy, School of Public Health, University of Michigan
 
"Controlling Health Costs:  Physician Responses to Patient Expectations for Medical Care"
 
Background: Physicians have dual responsibilities to make medical decisions that serve their patients’ best interests but also utilize health care resources wisely.  Their ability to practice cost-consciously is particularly challenged when faced with patient expectations or requests for medical services that may be unnecessary. Objective:  To understand how physicians consider health care resources and the strategies they use to exercise cost-consciousness to respond to patient expectations and requests for medical care. Design:  Exploratory focus groups of practicing physicians were conducted.  Participants were encouraged to discuss their perceptions of resource constraints, experiences with redundant, unnecessary and marginally beneficial services, and asked about patient requests or expectations for particular services. Participants:  Sixty-two physicians representing a variety of specialties and practice types participated in 9 focus groups in Michigan, Ohio, and Minnesota in 2012. Measurements:  Iterative thematic content analysis of focus group transcripts. Principal Findings:  Physicians reported making tradeoffs between a variety of financial and nonfinancial resources, considering not only the relative cost of medical decisions and alternative services, but the time and convenience of patients, their own time constraints, as well as the logistics of maintaining a successful practice.  They described strategies and techniques to educate patients, build trust, or substitute less costly alternatives when appropriate, often adapting their management to the individual patient and clinical environment. Conclusions:  Physicians often make nuanced trade-offs in clinical practice aimed at efficient resource use within a complex flow of clinical work and patient expectations.  Understanding the challenges faced by physicians and the strategies they use to exercise cost-consciousness provides insight into policy measures that will address physician’s roles in health care resource use.
 
 
 
 

Policy and Public Outreach

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.

Sponsored Events

In addition to the Bishop Lecture in Bioethics, CBSSM has sponsored and co-sponsored a number of other events.

Bioethics Grand Rounds

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.

Decision Consortium

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.” 

 

Lauren Smith, MD

Faculty

Dr. Lauren Smith is a Clinical Associate Professor in the Department of Pathology at the University of Michigan specializing in hematopathology.  She has been a member of the University of Michigan Adult Ethics Committee since 2005 and also serves as a Chair of the Michigan State Medical Society Ethics Committee.  Her research interests include ethical issues in clinical medicine and pathology.

 
Research Interests: 
Last Name: 
Smith

Research Ethics

Research Ethics Service

The Research Ethics Service, led by Kayte Spector-Bagdady, JD, MBioethics and Raymond De Vries, PhD within the Center for Bioethics and Social Sciences in Medicine, aims to enable a culture of normative, empirical, and educational inquiry to serve as the ethical backbone of research at Michigan Medicine. Its three areas of focus include:


1. Education: providing instruction on Research Ethics and Responsible Conduct of Research;
2. Consultation: offering a consulting service for colleagues with questions about the ethical conduct of research; 
3. Research: using a variety of methods to study issues in Research Ethics.


Research Ethics and Responsible Conduct of Research Education

Coursework and independent projects into research ethics and the responsible conduct of research may be available upon request. Current courses include the Responsible Conduct of Research for K Awardees (RCR4K) Implementation Package offered through the Michigan Institute for Clinical & Health Research (MICHR) and Legal Rules and Ethical Issues for Clinical Research (HMP 540) through the Clinical Research Design and Statistic Analysis Masters Program at the UM School of Public Health.


Research Ethics Consultation Service

Personalized Research Ethics Consultation may be available during normal business hours for investigators across Michigan Medicine designing or conducting their own research protocols. For further information or to request a consultation please contact kaytesb@med.umich.edu.


Mixed Methods Research into Human Subjects Research Ethics

The Program in Research Ethics also supports a vibrant mixed-methods empirical program for research on human subjects research ethics.

In a recent UofMHealth blog, Geoffrey Barnes weighs the pros and cons of Warfarin and Pradax, two atrial fibrillation medications.

The blog can be found here.

Supporting information for: 2012 CBSSM Research Colloquium

Making a baby in the 21st century: An updated user manual

Presenting author: Melissa Constantine, PhD, Postdoctoral Research Fellow, CBSSM

Genetic testing has had a major role in prenatal care for decades.  Aneuploidy screening tests use non-invasive measurements of maternal serum markers to indicate whether a fetus is at increased risk for Down syndrome (trisomy 21) and Edward syndrome (trisomy 18), chromosomal abnormalities for which there are no curative or interventional treatments.  Prenatal screening is often a starting point on a pathway of decision making regarding invasive testing – with associated non-negligible miscarriage risks – and the termination of pregnancy.  As such, decisions to accept or refuse prenatal screening are preference sensitive and patient informed consent or informed refusal is warranted.

In the last year, new methods of genetic analysis for fetal diagnosis for multiple conditions have been introduced for clinical use, and the array of detectable fetal conditions is expanding.  Clinically, the new methods substantially improve on current diagnostic protocols; they are non-invasive, safe, easy to use, have sensitivity and specificity approaching 100% and can be administered as early as 7-10 weeks gestation.  Yet the uptake of a prenatal diagnostic testing for genetic conditions will continue to be a value-laden, preference sensitive choice and the need for informed consent will remain.

Ostensibly, the purpose of offering testing and the subsequent decision is to increase a woman’s control in her reproductive choices.  Some characteristics of the new testing technologies, such as earlier, confirmatory diagnosis, may enhance this control, although research on the process and experience of decision making for prenatal testing has consistently identified several aspects of current testing protocols that actually diminish control and obfuscate the perception of choice.  This presentation will explore how the clinical integration of the new genetic tests may mitigate, or exacerbate, women’s control in decision making and choice for prenatal diagnosis.

Dr. Melissa Constantine earned her Ph.D. in Health Service Research from the University of Minnesota and is currently a Postdoctoral Research Fellow at the Center for Bioethics and Social Sciences in Medicine at the University of Michigan.  Dr. Constantine’s work in measurement and psychometrics includes development and validation of health-related scales such as the Pelvic Organ Prolapse and Incontinence Sexual Questionnaire (PISQ-IR).  Her research interests focus on the ethical and social implications of the clinical integration of prenatal genetic tests.

 

Using community-based participatory research and user-centered design approaches in developing an interactive diabetes decision aid

Presenting authors: Vida A. Henderson, PharmD, MPH, MFA, Center for Health Communications Research; and Deliana Ilarraza

Co-authors: Kathryn LC Barr, MPH; Lawrence An, MD; William Newhouse; Michele Heisler, MD, MPH

Background: Together, community-based participatory research (CBPR), user-centered design (UCD) and health information technology (HIT) offer promising approaches to improve health disparities.

Objectives: This presentation will describe the application of CBPR and UCD principles to the development of iDecide/Decido, an interactive, tailored, web-based decision aid delivered by community health workers (CHWs) to African-American and Latino participants with diabetes in Southwest and Eastside Detroit. The decision aid is offered in English or Spanish and is delivered on an iPad in participants’ homes.

Methods: The overlapping principles of CBPR and UCD used to develop iDecide/Decido include: a community or user-focused approach; equitable academic and community partnership in all study phases; an iterative development process that relies on input from all stakeholders; and a program experience that is specified, adapted, and implemented with the target community.

Results: Collaboration between community members, researchers, and developers are especially evident in the program’s: design concept, animations, pictographs, issue cards, goal setting, tailoring, and additional CHW tools.

Conclusions:  Applying the principles of CBPR and UCD can be successfully employed in developing health information tools that are easy to use and understand, interactive, and target health disparities.

Vida Henderson, PharmD, MPH, MFA, currently works with the behavioral science team at the Center for Health Communications Research where she writes and tests tailored content for multi-media health behavior interventions. She has worked as a clinical pharmacist providing health education and medication counseling to low-income communities; and she has served as a faculty member at Xavier University of Louisiana College of Pharmacy in New Orleans.  Vida has recently received a Master of Public Health degree in Health Behavior and Health Education from the University of Michigan. Her research interests include health communications, spirituality and health, and health disparities.

Deliana Ilarraza is a Community Health Worker for the Community Health and Social Services Center (CHASS)/REACH Detroit Partnership.  Deliana works with community organizations, schools and churches, establishing sites for physical activity classes and conducting diabetes awareness and prevention programs and studies.  She has worked with the National Kidney Foundation of Michigan, the Adolescent Diabetes Health Literacy Study, and the Journey to Health diabetes management and empowerment program, facilitating workshops, teaching curricula, and evaluation.

 

Resident attitudes toward ethical and medical decision-making for neonates born at the limit of viability

Presenting author: Naomi Laventhal, MD, MA, Clinical Lecturer, Department of Pediatrics and Communicable Diseases, CBSSM faculty

Co-author: Stephanie Kukora, MD

Background: Existing guidelines call for consistent resuscitation practices for extremely preterm infants based on epidemiologic data, but appropriate frameworks for value-driven decision-making in this context are still debated. Neonatologists’ attitudes are well-studied, but those of resident physicians are poorly understood.

Objectives: To describe residents’ knowledge of our practices, attitudes toward gestational age (GA) based resuscitation thresholds, and ethically relevant considerations for decision-making at the margin of gestational viability.

Methods: We surveyed our pediatric residents anonymously, asking them to identify current practices and ideal GA thresholds for offering and insisting on resuscitation, and the importance of contributing factors in decision-making for extremely preterm infants. Results: Response rate 61% (n =36).  Many (62%) residents correctly identified 23 weeks as the lower threshold for resuscitation in our NICU (range 21 - 24), despite finding our practices inconsistent (84%) and unclear (89%). Fewer (21%) correctly identified 24 weeks as the latest GA that parents may refuse resuscitation (range 23 - 42, 32% 25 weeks, 21% 26 weeks, 16% >26 weeks). Most disagreed with our current practices, identifying a preferred older GA for the lower threshold: 48% at 24 weeks, and 18% at 25 weeks (range 23-27). Most thought the upper threshold for elective resuscitation was too low, with 24% and 28% indicating 25 and 26 weeks, respectively, and 33% ≥28 weeks (range 24-40).  Compared to current considerations, they reported scientific evidence to be undervalued (p<.0001), and attendings’ personal beliefs to be overvalued (p<.0001). Responses trended toward family social and financial situations being undervalued. 

Conclusions: Our residents recognize decision-making for extremely preterm infants that is supported by known epidemiology, but attribute it to physicians’ personal beliefs, rather than scientific evidence. This suggests educational deficits, and a need for further study in a larger sample.  Preferences for a higher GA threshold for initiating resuscitation and a wider GA range in which parents may refuse it may reflect disproportionate pessimism about preterm infants.

Dr. Naomi Laventhal joined U-M in 2009, after completing her residency in pediatrics, fellowships in neonatology and clinical medical ethics, and a master’s degree in public policy at the University of Chicago.  In the Brandon Neonatal Intensive Care Unit at C.S. Mott Children’s Hospital she cares for critically ill newborns, provides prenatal consultation for parents expecting to deliver premature infants, and teaches neonatal-perinatal medicine and bioethics to residents and medical students.  Her research is in neonatal clinical ethics, and is currently focused on decision making for infants born at the margin of gestational viability.   Dr. Kukora is a resident in Pediatrics, having completed her MD at the University of Texas Southwestern Medical School.

 

Distrust of pediatricians’ sleep advice: Focus group results from the Project for African American Infant Safety

Presenting author:  Kathryn L. Moseley, MD, MPH, Assistant Professor, Department of Pediatrics and Communicable Diseases, CBSSM faculty

Co-author: Jennifer C. Sanchez, MPH

Background: Sudden Infant Death Syndrome (SIDS) is the number one cause of death for infants from birth to one year of age and can be reduced by placing the infant in the supine sleeping position. Although the number of SIDS-related deaths is decreasing, it still remains a significant issue, especially in the African American population where the supine sleep position is used less.  PrAAIS (Project for African American Infant Safety) is a randomized controlled trial promoting infant supine sleep among African American parents of newborns in Detroit, Michigan through the creation and distribution of tailored health educational materials.



Methods: We conducted six exploratory focus groups with a total of 29 African American parents of young infants to identify barriers and facilitators to infant supine sleep. 

Results: A prominent barrier that emerged during data analysis was distrust of physicians’ advice about supine sleep. This distrust stemmed from: a) skepticism of the validity of information provided by childless pediatricians, b) the paternalistic instructional style of pediatricians’ sleep advice (“you must do this”), and c), the frequent changes in sleep position recommendations that are not consistent with mothers’ lived experience, where the only rationale provided is that “studies show…”

Discussion: Parental distrust is not surprising, given these assessments.  Our results suggest that physicians may become more trustworthy sources of information about supine sleep if they: a) openly acknowledge parental confusion about the guidelines, b) provide concrete advice on methods to successfully achieve infant supine sleep in a more participatory manner, and c) place the danger of ignoring the guidelines in context through a discussion of both the relative and absolute risk to their infant of dying from SIDS or suffocation.

Dr. Kathryn Moseley is a clinical bioethicist as well as board-certified pediatrician and neonatologist.  For eleven years, Dr. Moseley was the Director of Bioethics for the Henry Ford Health System in Detroit, Michigan, overseeing a busy ethics consultation service.  She joined U-M in 2002 with a joint appointment in the Program in Bioethics and the Child Health Evaluation and Research Unit to conduct research on the racial differences in health care decision-making she discovered doing clinical ethics consultations and how those decisions are affected by culture and trust.  She recently received a grant from the NIH to conduct a 5-year trial of a culturally-tailored intervention to decrease the incidence of Sudden Infant Death Syndrome in the African American community.  She co-chairs the Pediatric Ethics Committee and directs the ethics consultation service at C.S. Mott Children’s Hospital.

 

What’s in a name? The effect of a disease label on parents’ decision to medicate a colicky infant

Presenting author: Laura D. Scherer, PhD, Postdoctoral Research Fellow, CBSSM and VA

Co-authors: Brian K. Zikmund-Fisher, PhD; Angela Fagerlin, PhD; Beth A. Tarini, MD

It is common for physicians to diagnose infants who have excessive regurgitation and associated crying with Gastroesophageal Reflux Disease (GERD).  From 1999-2004 there was a 7-fold increase in the use of prescription medications to treat GERD in infants <1 year old (Hassal, 2012).  However, clinical trials have shown that existing medications are no better than placebo in treating these symptoms (Orenstein et al., 2009) and the majority of infants grow out of this behavior without medical intervention.  Given this, it is unclear why medical treatment of GERD persists.  One possibility is that the way that physicians frame their assessment of the symptoms influences parents’ perceived need to medicate their child.  In the present study, we examined how a doctor’s explanation—in particular, the doctor’s use of the diagnostic label “GERD”—influences parents’ desire for medical interventions. To explore this question, we asked parents in the waiting room of a general pediatrics clinic to read a scenario (2x2 randomized design) in which they were asked to imagine they had an infant who cried and spit up excessively.  The scenario then described a pediatric appointment in which the infant either received a formal diagnosis of GERD, or not.  In addition, half of parents were explicitly told that existing medications are ineffective at treating the symptoms, or not.  Results showed that the presence of a GERD diagnosis made parents more interested in medicating their infant, even when they were explicitly told that the medications do not work.  Moreover, the GERD diagnosis made parents less likely to think that their infant would get better without medication, relative to parents who received no diagnosis.  In conclusion, physician labeling of normal infants as “diseased” may increase parents’ willingness to medicate their child.

Dr. Laura Scherer is a Postdoctoral Research Fellow at the VA Center for Clinical Management Research and the Center for Bioethics and Social Sciences in Medicine at the University of Michigan.  She received her PhD in Social Psychology from Washington University in St. Louis, and will soon be an Assistant Professor of Psychology and Health Sciences at the University of Missouri in Columbia.  Her interests include the impact of emotions and intuition on medical decision making, and the psychological phenomena that lead to medicalization and overtreatment.

 

Cracking the code: Ethical issues involved in the decision to undergo genetic testing

Presenting author: Lauren B. Smith, MD, Assistant Professor, Department of Pathology, CBSSM faculty

Advances in molecular diagnostics have led to the capability of sequencing an individual’s germline DNA or exome for as little as $1000. An ethical analysis and discussion of genetic testing, both historically and as it relates to this new technology, will be presented.  The discussion will include factors related to the decision to undergo testing, possible benefits and harms, and issues surrounding research protocols and commercial testing services.  The discussion will include an overview of testing for Huntington disease, breast-ovarian cancer syndromes, and Alzheimer’s disease as illustrative examples.

Dr. Lauren Smith is an Assistant Professor in the Department of Pathology at the University of Michigan, specializing in hematopathology.  She has been a member of the University of Michigan Adult Ethics Committee since 2005 and also serves as a member of the Michigan State Medical Society Ethics Committee.  Her research interests include ethical issues in clinical medicine and pathology.

 

The myth of individual risk    

Presenting author: Ralph Stern, MD, PhD, Clinical Assistant Professor, Department of Internal Medicine

Co-author: Zachary Goldberger, MD

Medical decision-making often relies upon clinical prediction models to estimate individual risk.  Morbidity and mortality predictions (e.g.  Framingham for ischemic heart disease in healthy patients or APACHE for mortality in critically ill patients) are often used for treatment decisions (e.g. statins, aspirin, hypoglycemic therapy).  As such, their prognostic value carries particular importance for shared decision-making with patients and their families.  However, it remains underappreciated that clinical prediction methods were developed to analyze disease in populations, not individuals.  The notion that such models can give individual patients a unique probability of a health outcome is highly debatable.  When the goal is allocating treatments to high risk subgroups to reduce costs, these models may be useful.  But when the goal is allocating treatments to high risk individuals, none of the models should be the sole basis for clinical decisions.

 Because risk cannot be measured in an individual, there is no way to experimentally verify any of the individual predictions provided by a model.  This can only be achieved by assembling a group of patients similar to the individual in question.  That each of these groups may have a different risk means there is no such thing as individual risk, an issue identified by John Venn in 1866 and known as the reference class problem.  Different models may yield substantially different individual risk estimates.  This is an inherent limitation, which is not eliminated by inclusion of more risk factors in the model or other proposed solutions.

While these models are widely used, it remains unclear how best to apply them.  Clinicians who use these models to make patient care decisions need to be aware of their limitations. 

Dr. Ralph Stern is an Assistant Professor of Medicine in the divisions of Cardiovascular Medicine and Molecular Medicine and Genetics.  His clinical interests are hypertension and medical and cancer genetics.  His research interests include risk stratification and the clinical utility of new risk factors.

Dr. Zachary Goldberger is a 4th year cardiology fellow and Robert Wood Johnson Clinical Scholar.  His research interests center on antiarrhythmic therapy.  Specifically, he is interested in understanding the attitudes and experiences of patients receiving implantable cardioverter-defibrilators (ICDs), and creating a decision aid to enhance shared decision-making for patients receiving ICDs for primary prevention of sudden cardiac death.  He is also studying utilization of antiarrhythmic therapy and drug toxicity, as well as patterns of care in resuscitation during in-hospital cardiac arrest.  His teaching interests center on improving ECG literacy and cardiac physical examination skills in trainees.

 

The swinging gate: Genetic testing and ethical issues

Presenting author: Wendy R. Uhlmann, MS, CGC, Clinical Assistant Professor, Departments of Internal Medicine and Human Genetics

Advances in genetic testing have resulted in an exponential increase in the number of genetic tests that are available.  Given the rapid pace of genetic test introduction, few tests have practice guidelines.  As a result, healthcare professionals who order these tests and the genetic testing laboratories have gate-keeper roles with genetic testing.  Genetic tests, unlike most medical tests, present some unique considerations given the potential familial implications in addition to the fact that genetic testing is a moving target.  Communication of genetic information and genetic test results along with medical record documentation of this information raises several ethical and policy issues, including: Who needs to know?  What information should be communicated?  Who is obligated to inform whom?  What factors need to be considered in the communication of genetic information?  Cases from the University of Michigan Medical Genetics Clinic will be used to illustrate ethical issues that clinicians encounter with patients pre-testing and post-testing, including: competing obligations, testing children, carrier testing for rare autosomal recessive genetic conditions, predictive genetic testing and broader insurance issues.  Weighing risks and benefits and resolving ethical issues with genetic testing decisions and communication of test results involves consideration of the core ethical principles in addition to assessment of both professional and patient obligations.  Careful consideration is needed in weighing competing obligations.  Understanding ethical issues currently experience din genetics clinics will help guide the handling of similar and novel future challenges that will arise with advances in genetic testing and genomic medicine.

Wendy R. Uhlmann, MS, CGC, is the genetic counselor/clinic coordinator of the Medical Genetics Clinic at the University of Michigan.  She is a Clinical Assistant Professor in the Departments of Internal Medicine and Human Genetics and an executive faculty member of the genetic counseling training program.  Wendy Uhlmann is a past president of the National Society of Genetic Counselors and currently serves on the National Center for Biotechnology Information (NCBI) Board of Scientific Counselors (BOSC), Medical Genetics Working Group.

Internet Survey Lab

Overview

The Internet Survey Lab at the Center for Bioethics and Social Sciences in Medicine (CBSSM), led by Dr. Brian Zikmund-Fisher, facilitates the programming of complex experimental designs, using the graphical and interactive capabilities of the Internet. CBSSM has extensive experience in developing, programming and conducting survey research using Internet-based methodologies. 

Why We Use the Internet

A key advantage of Internet surveys is that they can shape and direct a user's experience in response to computer generated randomization and/or respondents' own answers to questions earlier in the survey. Additionally, page and answer order can be truly randomized as appropriate to limit cognitive biases. The unique advantage of Internet surveys, however, is that many different types of stimuli can be randomized or varied; static visual images, movies, or sounds can all be used in addition to text. Furthermore, the nature of the browser interface enables user-directed interactivity, such as user-adjustable risk communication graphics, that provide unique opportunities for both knowledge communication and response assessment.

Using the Internet to conduct survey research is also very efficient: we can develop and test surveys in only a few months' time, and once a survey is ready, large scale data collection (e.g., 1500-3000 completed surveys) can be completed in only 2-3 weeks.  Such surveys can also be cost effective, since while significant effort goes into development, creation, and testing of the survey, almost no personnel effort is required for data collection, entering, coding, or cleaning.  In addition, oftentimes several small surveys can be combined into a single instrument, creating further efficiencies.

Sometimes, our studies use large, demographically diverse samples obtained through commercial survey research firms. This methodology allows us to tailor the population being surveyed on multiple demographic variables (e.g., sampling only women age 40-75 for a study about breast cancer treatments) and provides us with ample statistical power to conduct multi-factorial experimental tests. Other times, we use more inexpensive samples from Amazon Mechanical Turk (MTurk) for quick pilot testing or to enable rapid, iterative testing of designs. Regardless, the use of randomized designs ensures high internal validity for the research despite the use of an Internet-only sample.

CBSSM Surveys

CBSSM has had considerable success using this methodology, publishing multiple manuscripts in highly regarded peer-reviewed journals. Studies that have used this methodology have addressed a variety of topics, including:

  • The use of pictographs to display risk (20082008, 2014) including in comparison to other graphical formats (2008, 2010, 2010). 
    Note: to create your own pictographs, see www.iconarray.com.
  • Misprediction of happiness between younger and older adults (2005)
  • Elicitation of utility and willingness to pay (200720072008)
  • Research ethics, e.g., participation of mentally vs. medically ill in research (2005)
  • Risk communications that emphasize incremental risks instead of absolute risks (2008)
  • Simplifying risk communications about adjuvant therapy options (2008).
  • Effect of risk labels on prenatal screening decisions (2007).
  • Time-insensitivity in people's understanding of survival curves (20052007)
  • Self-other discrepancies in medical decisions (20062008)
  • Sequential vs. all at once presentations of risk information (2011)
  • Testing of animated or interactive risk graphics (2011, 2012, 2014)
  • Optimal levels of precision in risk communications (2011, 2012)
  • Framing of health promotion messages (2012)
  • Exploration of role of narratives in decision making (2010)
  • Values Clarification (2015)
  • Intuition and Deliberation in Decision Making (2015)

Contact Us

For questions about our methods or inquiries about potential Internet survey research collaborations, please contact Brian Zikmund-Fisher at bzikmund@umich.edu.

Darin Zahuranec’s survey study, “Variability in physician prognosis and recommendations after intracerebral hemorrhage” published in Neurology found that physicians vary substantially in ICH prognostic estimates and treatment recommendations. This study suggests that variability could have a profound effect on life and death decision-making and treatment for ICH.


Several CBSSM-affiliated faculty and alumni were co-authors: Angie Fagerlin, Meghan Roney, Andrea Fuhrel-Forbis, and Lewis Morgenstern.


http://ihpi.umich.edu/news/survey-severe-stroke-prognoses-differ-depending-doctor

CBSSM Seminar: Susan Goold & Zachary Rowe (DECIDERS Project)

Thu, December 15, 2016, 3:00pm
Location: 
NCRC, Building 16, Room 266C

Susan Goold, MD, MHSA, MA
Professor of Internal Medicine, Medical School
Professor of Health Management and Policy, School of Public Health

Zachary Rowe
Executive Director of Friends of Parkside (FOP)

Title:  Evaluation of CHAT as a tool for engaging communities in priority setting

Abstract:  Engaging minority and underserved communities in setting research priorities could make the scientific research agenda more equitable and more responsive to their needs.  This presentation evaluates CHAT, a serious game, to prioritize health research based on feedback from 47 focus groups (N=519) across Michigan.

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