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Supporting information for: 2013 CBSSM Research Colloquium and Bishop Lecture (Ruth Macklin, PhD)

PhotoVoice:  Promoting individual wellbeing and improving disaster response policies in Japan and beyond

Mieko Yoshihama, PhD, ACSW, LMSW, Professor, School of Social Work, University of Michigan

Co-authors: Yukiko Nakamura, Ochanomizu University Department of Interdisciplinary Gender Studies, Tokyo, Japan; Tomoko Yunomae, Women's Network for East Japan Disaster

Conducted in collaboration with local women’s organizations, PhotoVoice Project is aimed at strengthening gender-informed disaster policies and response in Japan by engaging the very women affected by the disasters in the analyses of their own conditions and advocacy efforts.  PhotoVoice, a method of participatory action research, involves participants taking photographs of their lives and communities, followed by a series of small-group discussions about their experiences while sharing their photographs (Wang & Burris, 1997). 

After the Great East Japan Disasters of March 11, 2011, a diverse group of women (N=35) in five localities in the most disaster-affected areas of northern Japan participated in PhotoVoice group discussions (4-7 sessions in each location).  A significant minority of the participants have been assisting other disaster victims as part of their regular employment or through volunteer effort. 

The participants’ photographs and narratives identified various ways in which Japanese sociocultural and structural factors affected women’s vulnerabilities in and after disasters.  Traumatic stress and compassion fatigue were prevalent, yet denial and suppression were common response.  Facilitated group discussions served as a collective space for grieving the loss and rebuilding their lives.  Through repeated group discussions, participants also questioned and identified limitations and failures of the current disaster policies as well as those concerning nuclear energy.  Also evident were participants’ increased interest and desire to speak out, similar to the processes of politicalization and conscientization/conscientização (Freire, 1970). 

Findings of the project elucidate how individuals respond to trauma, dislocation, and devastation; how individual experiences are influenced by sociocultural and structural forces; and how individuals make sense of disaster and structural inequity, and to formulate action to address them.  Findings of the project also suggest that participatory action research such as PhotoVoice could promote participants’ growth and wellbeing by providing space for collective reflections, rebuilding, and action.

Mieko Yoshihama is a Professor of Social Work at the University of Michigan. Dr. Yoshihama's research interests are violence against women, immigrants, mental health, and community organizing. Combining research and social action at local, state, national, and international levels over the last 25 years, Dr. Yoshihama focuses on the prevention of gender-based violence and promotion of the safety and wellbeing of marginalized populations and communities.

 

Representing torture of women in custody in the U.S.

Carol Jacobsen, MFA, Professor, The University of Michigan Penny Stamps School of Art & Design, Women’s Studies; Human Rights Director, Michigan Women’s Justice & Clemency Project

More than a decade ago, Amnesty International launched its first ever campaign on torture in the U.S.  Working with human rights activists, including prisoners, attorneys, artists, and others, the ongoing campaign has focused on the four point chaining, rape, retaliation, medical neglect and other forms of abuse of women occurring in U.S. prisons.  As a grassroots, feminist filmmaker working with Amnesty on this issue, in my role as Director of the Michigan Women’s Justice & Clemency Project, and as an educator of visual art, women’s studies and human rights, many questions arise about issues of state and individual power, gender, race, representation, exploitation, censorship and voice as we struggle to make torture a visible and public issue in order to ultimately end it.  This presentation will include an excerpt from my film, Segregation Unit.

Segregation Unit, 30 min., 2000

Carol Jacobsen, Director

Narrated by Jamie Whitcomb following her release from prison, the film documents the torture she and many others have suffered (and continue to suffer) in Michigan prisons.  The film includes footage shot by guards that was obtained through subpoenas and the Freedom of Information Act in connection with Whitcomb’s successful lawsuit against the State.  Co-sponsored by Amnesty International, Segregation Unit is a nonprofit film available free to activists.

Carol Jacobsen is a social documentary artist whose works in video and photography draw on interviews, court files and records to address issues of women's criminalization, censorship and human rights.  Her work, co-sponsored by Amnesty International, is represented by Denise Bibro Gallery in New York, and has been exhibited and screened worldwide.  She has received awards from the National Endowment for the Arts, the Paul Robeson Foundation, Women in Film Foundation, Rockefeller Foundation and others. Her critical writings have appeared in the New York Law Review, Hastings Women's Law Journal, Signs Journal, Social Text, Art in America and other publications. She teaches Art, Women's Studies and Human Rights at UM, and serves as Director of the Michigan Women's Justice & Clemency Project, a grassroots advocacy and public education effort for freedom and human rights for incarcerated women.

 

Do non-welfare interests play a role in willingness to donate to biobanks?

Michele C. Gornick, PhD, Postdoctoral Research Fellow, VA Health Science, Research & Development and CBSSM, University of Michigan

Co-authors: Tom Tomlinson, PhD, Kerry Ryan, MA and Scott Kim, MD, PhD

Ethical debate has focused on protecting donor welfare and privacy interests.  Little attention has been given to individual donor concerns about the moral, societal, or religious implications of research using their donation. The current study explores the impact of non-welfare interests (NWIs) on participants’ willingness to donate de-identified tissue samples and medical records to biobanks through an experimental online survey (N=1276; 46.3% women; 19.6% racial minority).  Participants were more likely to donate to biobanks for NWI topics commonly associated with ‘science’ and medical research (evolution and stem cell research) than unfamiliar uses of biosamples (commercialization/corporate profit and risk assessment by insurance companies).  In addition, mode (single vs. multiple scenario) and timing (before vs. after blanket consent) of NWI disclosure affect individual’s willingness to donate.  Further, key subject characteristics influence participants’ willingness to donate, even after controlling for NWI scenario assignment (Racial minorities: OR = 0.59, 98% CI 0.34, 0.99, Evangelical Christians: OR = 0.55, 98% CI 0.35, 0.89, Liberal political views: OR = 1.66, 98% CI 1.06, 2.60). These data suggest that NWI issues have complex dimensions that require careful elicitation and evaluation of people’s opinions regarding them. Further, policy recommendations for biobank donation based only on welfare and privacy may neglect other interests that are highly vales by potential donors.

Michele Gornick 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 Human Genetics and MA in Statistics from the University of Michigan.  Her research is in translational medicine, specifically dealing with ethical issues surrounding the communication of genomic information to cancer patients, physicians and other health care providers.

 

Which research? Public engagement and opinions about the research use of biobank samples

C. Daniel Myers, PhD, Robert Wood Johnson Scholar in Health Policy Research, Department of Health Management and Policy, School of Public Health, University of Michigan

Daniel B. Thiel, MA, Assistant Director,  Life Sciences and Society Program, School of Public Health, University of Michigan

Co-authors: Ann Mongoven, PhD, MPH; Jodyn Platt, MPH; Tevah Platt, MPH; Susan B. King; Sharon L. R. Kardia, PhD

Do potential biobank donors approve of using biobank samples for research, and do they care what kinds of research is done on their samples?  We explored this question in various public engagement forums related to the Michigan BioTrust for Health, a recently established state research biobank of de-identified leftover newborn screening bloodspots. Results suggest that that the type of public engagement affects participant responses about whether research using leftover bloodspots is appropriate, and what types of research are should be conducted.  In more superficial kinds of engagement participants show nearly-unanimous support for research, support that does not vary greatly across different kinds of research. However, more intensive forms of engagement find somewhat greater skepticism about research, and support that varies according to what aspect of a study is emphasized—target population, disease in question, type of analysis (e.g., genetic or not).  Furthermore, more intensive engagements facilitate deeper reflection on the inherently uncertain nature of biobank research applications.  This uncertainty brings issues of governance and oversight to the foreground. While there are some areas of broad consensus, there is also widespread disagreement on what kinds of research should and should not be pursued. On a practical level, this variation suggests that singular sources on public opinion may not be adequate to judge public support for biobanking, and that research and policy communities should consider best practices for eliciting educated public opinion on acceptable research. On a more conceptual level, the variety of conceptions of appropriate research uses suggests that informed consent and community oversight processes should account for this pluralistic conception of the public good. 

C. Daniel Myers is a Robert Wood Johnson Scholar in Health Policy at the University of Michigan School of Public Health. His research focuses on how political communication affects public attitudes, particularly in the context of public deliberation. He is currently involved in research projects on the role of stories sin political communication as well as on public deliberation about priorities for patient centered outcome research. He received his Ph.D. in Political Science from Princeton University and his B.A. in Political Science from Allegheny College. Starting in 2013 he will be an Assistant Professor of Political Science at the University of Minnesota.

Daniel Thiel is currently the Assistant Director of the Life Sciences and Society Program at the University of Michigan where he wears many hats, including directing a community engagement research project about the Michigan BioTrust for Health.  Prior to this position he taught classes in political philosophy, ethics and the philosophy of law at John Jay College in New York City. His research interests are primarily in the fields of bioethics, science and technology studies and social and political philosophy.  He completed an M.A. in Philosophy at Stony Brook University and a B.A. in Philosophy at U.C. Berkeley.

 

Whose sense of public good? Public engagement results from the Michigan BioTrust and ethical implications

Ann Mongoven, PhD, MPH, Assistant Professor, Center for Ethics and Humanities in the Life Sciences and Department of Pediatrics and Human Development, Michigan State University

Co-author: Meta Kreiner, MSc

Can policy-makers assume a consensus on what constitutes “the public good” of a public health biobank? If not, what are the implications for biobank ethical policies?  We explore these questions in relationship to public engagement on the Michigan BioTrust.  The BioTrust is a recently established state research biobank of de-identified leftover newborn screening bloodspots.  BioTrust guidelines require that any research using bloodspots be (a) health research and (b) in the public good.  The biobank operates with an opt-out “blanket” presumed consent policy for bloodspots saved before 2010, and an opt-in blanket consent policy for bloodspots saved from 2010 onward.

Community engagement on this issue suggests pluralistic conceptions of what constitutes the public good among Michigan residents.  While some types of research generate broad consensus; others generate significant disagreement.   Risk/benefit assessments also vary according to both degree and kind, including: potential for scientific/medical advances, economic considerations, and individual or group risk/benefit from biobank participation.  Because the bloodspots come from children, some focus on benefits/risks for children; others do not.  These results suggest pluralistic conceptions of what constitutes “public good” are at play when citizens assess both if and when the state should use biobank samples for research, and also whether they should allow research on their own children’s bloodspots.  

The results also have implications regarding informed consent processes and community oversight for a bloodspot biobank.  Lack of consensus on what research is “in the public good” adds empirical weight to ethical requirements that biobanks inform donors before using their bloodspots for research, make lay research descriptions available,  include community oversight in biobank governance, and ensure an opt-out mechanism.  They suggest the worthiness of considering “by-study” or “tiered” consent options while underscoring their practical challenges.  Significantly, even blanket consent and community oversight processes can be improved by acknowledging lack of consensus on what constitutes the public good as a risk of participation.

Ann Mongoven is an Assistant Professor at the Center for Ethics and Humanities in the Life Sciences, Michigan State University. She earned her Ph.D. in religious studies/ethics from the University of Virginia and a M.P.H. from the Johns Hopkins University Bloomberg School of Public Health. Mongoven is also a Michigan State University Lilly Teaching Fellow.

 

Citizen recommendations for communication about biobank participation and consent: Considering source, message, channel, receiver, and timing

Andrea C. Sexton, BA, Master of Arts Student, Health and Risk Communication, College of Communication Arts and Sciences, Michigan State University

Co-authors: Ann Mongoven, PhD, MPH; Meta Kreiner, MSc

Source, message, channel, and receiver are fundamental factors in models of the communication process.  Public and clinical health practitioners must consider these factors in order to design effective health communication.  This paper a) reports citizen recommendations for a multi-faceted educational campaign on the Michigan Biotrust; b) analyzes these recommendations by source, message, channel, and receiver characteristics; and c) argues that integrating these recommendations with communication theory suggests both practical strategies for recommendation implementation and extensions of theoretical models of the communication process. 

The Michigan BioTrust for health is a state research biobank containing bloodspots leftover after newborn bloodspot screening. In November of 2011, seven deliberative processes engaged a representative sample of Michigan citizens. Five sessions were conducted in-person, each in a different Michigan city. Two sessions were run as Facebook discussion groups.

The primary recommendation from these juries is a multi-faceted campaign to increase public awareness of the BioTrust and its consent processes. The deliberators propose specific suggestions about who should provide information, what content should be communicated, the mediums through which education should occur, and their impressions of citizen responses to current and recommended BioTrust communications.

In addition to identifying source, message, channel, and receiver characteristics, jury participants distinctly emphasize the importance of communication timing.  They consider the effect of timing on receivers’ motivation and ability to process information, investigate their options, and ask questions. They also suggest a relationship between timing of communication about the Biotrust and public attitude toward the BioTrust.

Exploring jury participants’ suggestions for education about the BioTrust has implications for clinical interactions, health education curriculums, and mass media campaigns regarding informed consent for biobanks, as well as ethical solicitation of biobank participation. Additionally, emphasis on timing as a key factor in communication may warrant further consideration in theoretical models of the communication process.

Andrea Sexton is a candidate for a Master’s of Arts in Health & Risk Communication at Michigan State University where she is a research assistant in the Center for Ethics and Humanities in the Life Sciences on a project researching community engagement on the Michigan BioTrust for Health. She has also contributed to health communication research on hand washing, health website quality, nutritional labeling, and community engagement in sustainable food system development. Andrea’s research interests include community engagement in health and environmental issues and health and risk decision making. She completed her B.A. in Linguistics & Psychology at the University of Michigan.

 

Comparing male and female BRCA mutation carriers’ communication of their BRCA test results to family members

Monica Marvin, MS, Associate Director of the Genetic Counseling Program;  Genetic Counselor in the Cancer Genetics Clinic; Clinical Assistant Professor; University of Michigan, Department of Human Genetics and Internal Medicine

Co-authors: Heidi Dreyfuss, MS; Lindsay Dohany, MS; Kara Milliron, MS;  Sofia Merajver, MD, PhD; Elena Stoffel, MD, MPH; Beverly Yashar, MS, PhD; and Dana Zakalik, MD

Current national guidelines state that patients with positive BRCA results should be urged to notify at-risk relatives.  Most research on communication of BRCA results is limited to communication by females and suggests that communication to males occurs less frequently. 

The objective of this exploratory study is to identify gender-related characteristics in communication of BRCA results to improve familial communication.

677 individuals who received genetic counseling from three clinics in Michigan were invited to participate.  Subjects completed a 34-item survey comprised of novel and previously published questions exploring whom they informed, information shared, method of communication, and factors impacting the decision to undergo testing and disclose results.  Communication patterns were examined within the entire cohort and comparisons were made between males and females.

Participants included 35 males and 202 females.  Overall greater than 78% of parents shared their test results with at least one of their children with a greater percentage of fathers disclosing to their children than mothers.  The disclosure was mostly done in-person and the information shared did not vary much between genders except a greater proportion of mothers with daughter(s) discussed the impact genetics can have on their daughter’s medical management than fathers with their daughter(s).  For both males and females, the top reasons for disclosing to children included: 1) wanting to inform them about their risk, 2) feeling the results will impact management, 3) wanting to encourage testing, and 4) having a close relationship. 

In genetic counseling, gender of a BRCA mutation carrier does not appear to greatly affect the frequency or method of communication of test results.  Furthermore, we found that communication to male and female relatives occurred with a similar frequency.  This suggests that current practice effectively enables comprehensive family communication.

Monica Marvin is a Clinical Assistant Professor in the Department of Human Genetics who serves as the Associate Director of the University of Michigan Graduate Program in Genetic Counseling.  She also functions as a clinical genetic counselor in the UM Cancer Genetics Clinic.  Monica obtained her Masters Degree in genetic counseling from the University of Michigan in 1994. Prior to returning to the University of Michigan in 2005, she worked as a genetic counselor at New Jersey Medical School and Spectrum Health in Grand Rapids, MI. In addition to her work here within the University, Monica is also active in national and state-wide efforts to advance the profession of genetic counseling.  

 

A Gift for All: Everyone has something to give - Approaching dialysis patients about donating their organs

Allyce Smith, MSW, Program Coordinator, National Kidney Foundation of Michigan

Co-authors: Ann Andrews, MPH; Jerry Yee, MD; Holly Riley, MSW; Remonia Chapman; Ken Resnicow, PhD

The organ donor waiting list continues to grow.  Individuals with End Stage Renal Disease (ESRD) are not typically viewed, by themselves or their health care team, as potential donors after death. However, ESRD patients are eligible to donate and may obtain a sense of empowerment in knowing they can give, as well as receive. Others feel that asking ESRD patients to sign up on the Donor Registry is unethical. This study will evaluate the effectiveness of using peer mentor to inform dialysis patients about their ability to sign up on the Donor Registry, ultimately increasing their numbers on the Registry.

Using a cluster randomized design, this controlled intervention study is conducted in collaboration with the National Kidney Foundation of Michigan (NKFM), the University of Michigan School of Public Health (UM SPH), Greenfield Health Systems (GHS), Henry Ford Health System, and Gift of Life Michigan.  Twelve dialysis units will be  randomized to an intervention or comparison group. Participants in the comparison units receive mailings about organ donation while patients in intervention units are assigned peer mentors and meet 7 times over a 4-month period. Peer mentors are individuals with ESRD who have adjusted positively to living with kidney disease and volunteer to lend support to others coping with kidney disease. Peer mentor-patient meetings cover coping with chronic illness and leaving a legacy through deceased organ donation.  During the meetings, peer mentors utilize Motivational Interviewing, a person-centered method of guiding patient decision-making and strengthening motivation for change.

The primary outcome is mail/internet registrations on the Donor Registry.  Pre/post surveys will be used to evaluate change in organ donation knowledge and attitudes, self-reported donation status, hope for the future, and quality of life.

To date, 150 Greenfield staff, 33 peer mentors, and over 280 patients have participated in 10 dialysis units.

Allyce Haney Smith has been a program coordinator at the National Kidney Foundation of Michigan since 2010. She graduated with her Master’s degree in Social Work from the University of Michigan. She currently coordinates the project, A Gift for All: Everyone Has Something to Give. In this role, Ms. Smith works to help empower patients to become more involved in their own care and end of life decisions.

 

Putting patient-physician communication in context: An empirical analysis of sequential organization and communication transitions during visits for new diagnoses of early stage prostate cancer.

Danielle Czarnecki, PhD Candidate, Department of Sociology, University of Michigan

Co-authors: Stephen G. Henry, MD; Valerie Kahn, MPH; Wen-Ying Sylvia Chou, PhD, MPH; Angela Fagerlin, PhD; Peter A. Ubel, MD; David R. Rovner, MD, FACP; Margaret Holmes-Rovner, PhD

Background: Patients and physicians typically schedule visits to discuss new diagnoses for which patients have multiple treatment options. How communication is organized during these visits is unknown.

Objective: To investigate the organization of communication tasks and the transitions between these tasks during visits in which patients and physicians discuss diagnosis and treatment of early stage prostate cancer.

Methods: We characterized the sequential organization of 40 visits in which patients received a new diagnosis of early stage prostate cancer. We used transcripts to identify communication tasks and develop a coding system to identify transitions between these tasks. We analyzed a) the organization of communication tasks during these visits and b) how patients and physicians communicate during transitions between tasks.

Results:  We identified five major communication tasks, which typically occurred in the following sequence: diagnosis delivery, risk classification, options talk, decision talk, and next steps. Visit organization was physician-driven. Patients resisted physicians’ attempts to transition from a) options talk to decision talk and b) decision talk to next steps by requesting more information about options and clarification about the decision making process, respectively. Physicians showed resistance when patients attempted to discuss decisions before physicians finished discussing treatment options. The overall organization of communication reflected physicians’ focus on delivering a thorough discussion of treatment options. Patient speech was relatively uncommon but increased towards the end of visits. Patients showed some uncertainty about the visit purpose and their role in the decision making process.

Conclusions: In visits discussing new diagnoses of prostate cancer, the overall visit organization and communication during transitions reveal an emphasis on discussing treatment options. Physicians’ focus on discussing options fulfills an important obligation for informed consent, but may not be responsive to patients’ informational or emotional needs.

Danielle Czarnecki is a doctoral candidate in the Department of Sociology at the University of Michigan. Her dissertation research is on religion and assisted reproductive technologies. She examines how infertile Catholic and Evangelical women navigate religious and scientific discourses in their attempts to build families.

Give me colostomy or give me death! (Aug-06)

Click to decide between death and living with a colostomy. Which would you choose? Are you sure?

Given the choice, would you choose immediate death,or living with a colostomy (where part of your bowel is removed and you have bowel movements into a plastic pouch attached to your belly)?

  •  Immediate Death
  •  Colostomy

Think about what it would be like if you were diagnosed with colon cancer. You are given the option of choosing between two surgical treatments.The first is a surgery that could result in serious complications and the second has no chance of complications but has a higher mortality rate.

Possible outcome Surgery 1
(complicated)
Surgery 2 
(uncomplicated)
Cure without complication 80% 80%
Cure with colostomy 1%  
Cure with chronic diarrhea 1%  
Cure with intermittent bowel obstruction 1%  
Cure with wound infection 1%  
No cure (death) 16% 20%

If you had the type of colon cancer described above, which surgery do you think you would choose?

  • Surgery 1
  • Surgery 2

How do your answers compare?

In fact, past research has shown that 51% people choose the surgery with a higher death rate, even though most of them initially preferred each of the four surgical complications, including colostomy, over immediate death.

Are you saying what you really mean?

CBDSM investigators Brian Zikmund-Fisher, Angela Fagerlin, Peter Ubel, teamed up with Jennifer Amsterlaw, to see if they could reduce the number of people choosing the surgery with the higher rate of death and therefore reducing the discrepancy. A large body of past research has shown that people are notoriously averse to uncertainty. The investigators had a hunch that uncertainty could account for some of the discrepancy. Surgery 1 has a greater number of ambiguous outcomes, perhaps causing people to be averse to it. In an effort to minimize this uncertainty, the investigators laid out a series of scenarios outlining different circumstances and presentations of the two surgeries. For example the research presented some of the participants with a reframing of the surgery information, such as:

Possible outcome Surgery 1
(complicated)
Surgery 2 
(uncomplicated)
Cured without complication 80% 80%
Cured, but with one of the following complications: colostomy, chronic diarrhea, intermittent bowl obstruction, or wound infection 4%  
No cure (death) 16% 20%

The investigators believed by grouping all of the complications together that people would be more apt to chose the surgery with the lower mortality rate, because seeing a single group of undesirable outcomes, versus a list, may decrease some of the ambiguity from previous research.

Although none of the manipulations significantly reduced the percentage of participants selecting Surgery 2, the versions that yielded the lowest preference for this surgery all grouped the risk of the four possible complications into a single category, as in the example shown above.

Why these findings are important

Over the past several decades there has been a push to give patients more information so they can make decisions that are consistent with their personal preferences. On the other hand there is a growing psychological literature revealing people's tendency to make choices that are in fact inconsistent with their own preferences; this is a dilemma. Because the present research suggests that the discrepancy between value and surgery choice is extremely resilient, much research still needs to be done in order to understand what underlies the discrepancy, with the goal of eliminating it.

The research reported in this decision of the month is currently in press. Please come back to this page in the near future for a link to the article.

Read the article:

Can avoidance of complications lead to biased healthcare decisions?
Amsterlaw J, Zikmund-Fisher BJ, Fagerlin A, Ubel PA. Judgment and Decision Making 2006;1(1):64-75.

 

 

 

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.

Adult Ethics Committee

The Michigan Medicine Committee advisory groups are appointed by the Hospital's Office of Clinical Affairs. They review ethical or moral questions that may come up during an adult patient's care. The consultants facilitate communication among adult patients, their families and the treatment team to assist everyone in making appropriate choices when difficult decisions need to be made. The Committee's goal is to help everyone decide the right thing to do. The Michigan Medicine Adult Ethics Committee is a sub-committee of the Executive Committee on Clinical Affairs as determined by the Medical Staff Bylaws.

About Us

Sometimes patients, families and staff have very difficult choices and ethical questions they need to talk about. Discussions with the Ethics Committee can be helpful and reassuring when a difficult choice must be made (for example, questions on end-of-life care, or issues of confidentiality). The goal of the Committee is to facilitate communication among adult patients, their families and the treatment team to assist everyone in making appropriate choices, as well as to assist Michigan Medicine in complying with ethical regulatory standards, when difficult decisions need to be made. The Committee provides consultation to the treatment team, patients and families on ethical, moral or philosophical problems and issues encountered in the course of managing inpatient and outpatient care.

Committee members include physicians, residents, nurses and social workers, as well as medical students, an attorney/compliance officer, a chaplain, a medical ethics professor and members from the community.

The Adult Ethics Committee meets on the third Tuesday of the month, form 12-1:30pm, at University Hospital in dining room D, if you would like to attend as a guest, please contact Amy Lynn @ lynnam@med.umich.edu

What happens when a meeting with the Ethics Committee is requested?

The consultants on call review the patient's medical situation and treatment options. In addition, concerns and feelings of the patient, family members, and the health care team are discussed. Members of the committee may visit with patients, families and medical personnel to discuss these concerns.

Ethics Committee members discuss the information which has been gathered. The Ethics Committee makes suggestions about the best course of action. Often there are a number of options available in the course of a patient's care. Final decisions are made by the patient, family and the health care team.

Request a Consult

Monday-Friday
8:00 a.m. - 5:00 p.m. Call 734-615-1379
After normal business hours, please call 936-6267 and ask for the clinical ethicist on call to be paged.

Resources

Financial Assistance

Non-Beneficial Treatment

Advance Directives

Committee Bylaws

 

For upcoming Bioethics Grand Rounds see Events

Pediatric Ethics Committee

The Michigan Medicine Committee advisory groups are appointed by the Hospital's Office of Clinical Affairs. They review ethical or moral questions that may come up during a pediatrics patient's care. The consultants facilitate communication among patients, their families and the treatment team to assist everyone in making appropriate choices when difficult decisions need to be made. The Committee's goal is to help everyone decide the right thing to do. The Michigan Medicine Ethics Committee is a sub-committee of the Executive Committee on Clinical Affairs as determined by the Medical Staff Bylaws. 

About Us


The committee is available for consultation to family members, patients, staff, and health care providers. The committee may help you and your child’s medical team clarify facts, examine ethical issues, and assist in the resolution of disagreements about your child’s care. The committee includes people with additional training in medical ethics, doctors, nurses, social workers, a lawyer, a chaplain, an administrator, and members of the community
The University of Michigan has a Pediatric Ethics Committee because the best medical care requires not only medical skill but good moral judgment. The Committee’s main purpose is to offer help and guidance on moral and ethical questions, such as:

  • Should treatment be started or stopped?
  • How much should a child be told about his or her disease?
  • Is the promise of treatment worth the suffering it may cause?
  • What is the best thing to do when we must face the end of life?
  • What happens when a meeting with the Ethics Committee is requested?

The consultants on call review the patient's medical situation and treatment options. In addition, concerns and feelings of the patient, family members, and the health care team are discussed. Members of the committee may visit with patients, families and medical personnel to discuss these concerns.

Ethics Committee members discuss the information which has been gathered. The Ethics Committee makes suggestions about the best course of action. Often there are a number of options available in the course of a patient's care. Final decisions are made by the patient, family and the health care team.

The Pediatric Ethics Committee meets on the first Tuesday of the month from 12-1:30pm at University Hospital in dining rooms C&D. If you would like to attend as a guest, please contact Amy Lynn @ lynnam@med.umich.edu

Request a Consult

Monday-Friday
8:00 a.m. - 5:00 p.m. Call 734-615-1379
After normal business hours, please call 936-6267 and ask for the clinical ethicist on call to be paged.

Resources

Financial Assistance

Non-Beneficial Treatment

Committee Bylaws

 

For upcoming Bioethics Grand Rounds see Events

 

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.

Supporting information for: 2018 CBSSM Research Colloquium and Bishop Lecture (Barbara Koenig, PhD)

Parent Perceptions of Antenatal Consultation for Extreme Prematurity
Presenter: Stephanie Kukora, MD
 

Co-authors: Naomi Laventhal, MD, MA; Haresh Kirpilani, MD; Ursula Guillen, MD
 

Antenatal consultation (AC) for extreme prematurity is routine in neonatology practice, but questions remain about how best to meet the needs of expectant parents. Decision-aids have demonstrated improvement in communication of statistical outcomes, but whether they are uniformly helpful in AC, and whether provision of outcome data is essential to shared decision-making in the AC encounter remains uncertain.

To characterize the experience of parents threatened with extreme prematurity between 22 and 25 weeks gestation who received AC, identify aspects that parents perceived as favorable or unfavorable, and identify areas for improvement.

We analyzed free text responses of expectant parents enrolled in a multi-center randomized trial evaluating the use of a validated decision-aid (DA) compared to standard counseling. Qualitative thematic analysis of responses identified items valued for decision-making about delivery room resuscitation.

 201 parents were enrolled; 126 provided substantive free-text comments. 45 (36%) parents described their counseling experience positively.  31 (25%) reported a negative experience, and 23 (18%) offered suggestions for improvement.  Desire for a tailored approach was a major theme reported by many parents, with subthemes of too much or too little information, facts vs values-based counseling, and diverse learning styles.  Another major theme was shared decision-making. Subthemes included:  good or poor understanding of the decision/options; trust; parent engagement, feeling supported in decision-making.  Need for clinician sensitivity also emerged as a major theme, with subthemes of hope, thoughtful timing of AC, and identification and support of parents’ stress and emotions. 31 parents receiving AC with the DA (n=102) commented that visual depiction of the statistical information helpful.

Many parents expressed that factual information about outcomes was influential to their decisions, but some parents dislike this approach.  In addition to tailoring how and what information is communicated during AC, clinicians should be sensitive to parents’ individual needs in this context.

 

Hospice Care Quality in U.S. Nursing Homes Reported by Patients and Caregivers in Yelp Reviews

Presenter: Chithra Perumalswami, MD, MSc
 

Co-authors: Jayme Laurencelle, MD; Shawna O’Reilly, MD; Jennifer Griggs, MD, MPH; Raina Merchant, MD, MSHP
 

Background: The need to assess the quality of hospice care provided in nursing homes is a national priority. Patients and caregivers often utilize online forums such as Yelp to informally report on the experience of their healthcare episodes. These narratives are a unique data source and may provide valuable insights into the quality of care provided in U.S. nursing homes at the end of life.

Objective: To explore the content of Yelp reviews of nursing homes providing care at the end of life, specifically utilizing quality measures for palliative and hospice care determined by the National Quality Forum (NQF).

Methods: We performed a qualitative content analysis of 3560 Yelp reviews selected by a type of natural language processing.  The reviews were double coded and the final coding scheme incorporated concepts from all of the NQF domains. Larger themes were determined by consensus.

Results: Four themes were identified: 1) staff interpersonal expertise (empathic characteristics and effective communication), 2) staff technical competence (expertise in skills, staff attention, and efficiency of response), 3) systems issues (physical facility characteristics and cleanliness), and 4) patient wellbeing (physical and emotional wellbeing, family trust and confidence in care).

Conclusion: Yelp reviews of nursing homes providing hospice identify concepts that are mostly congruent with the current NQF domains. Medicare uses the NQF domains and preferred practices in the Hospice Quality Reporting Program (HQRP) to measure and report on quality. Utilizing Yelp reviews may help to identify additional quality measures, including a more nuanced view of aspects of quality of care in nursing homes at the end of life. Future research should focus on how to make such unprompted narratives more accessible and on how to incorporate additionally identified concepts regarding quality into the HQRP.


Impact of MCI on Patient and Care Partner Preferences and Physician Decision Making for Cardiovascular Treatment

Presenters: Bailey Reale, MPH; Emilie Blair
 

Co-authors: Darin Zahuranec, MD, MS; Kenneth Langa, PhD;  Jane Forman, ScD, MHS; Bruno Giordani, PhD; Brenda Plassman, PhD; Kathleen Welsh-Bohmer, PhD; Colleen Kollman, MBA; Deborah Levine, MD, MPH
 

Background: The leading cause of death for the 5.4 million older adults with mild cognitive impairment (MCI) in the US is cardiovascular disease (CVD). Despite this, patients with pre-existing MCI may receive fewer treatments for CVD events such compared to cognitively normal patients. We conducted interviews of patients, care partners, and physicians to understand how MCI influences decision making for CVD treatments.

Methods: Qualitative study based on in-depth, semi-structured, in-person interviews with patient-care partner dyads (n=23) and physicians (n=18) using a standard guide. We used qualitative content analysis to identify unifying and recurrent themes. We gathered reflections on data suggesting neurologists recommend fewer treatments for stroke to older adults with MCI and elicited how MCI influences patient-care partner preferences for 5 common CVD treatments. We also sought to understand how a patient’s having MCI influenced physicians’ decisions to recommend these 5 CVD treatments.

Results: Most MCI patients, cognitively normal patients, and their care partners wanted all 5 stroke treatments (Table 1). Participants reported several factors affecting their decision-making for treatment (Table 1). Some participants thought that physicians might recommend fewer stroke treatments to patients with pre-existing MCI because physicians have biases about MCI patients (Table 1).

Most physicians described MCI as influencing their recommendations for CVD treatments in at least one of five ways (Table 2). Physicians reported recommending CVD treatments less to MCI patients due to their assumptions about the MCI patients and MCI itself (Table 2).

Conclusions: MCI patients have similar preferences for treatments for CVD events as do cognitively normal patients, yet physicians often recommend these treatments less often to MCI patients. We need to better understand how physician recommendations contribute to potential underuse of effective CVD treatments in MCI patients in order to improve the quality of CVD care for this large and growing population.


It’s all about Context: A Mixed-Methods Study of Institutional Review Board’s Local Context Assessment
Presenter: Adrianne Haggins, MD


Co-authors: Deneil Harney; Sacha Montas, MD, JD; Joy Black, BSN, MS; Neil Dickert, MD, PhD; Timothy Guetterman, PhD; Michael Fetters, MD; Robert Silbergleit, MD


Background: Local context assessment ostensibly allows review boards to closely consider the potential impact to study populations, the institution, and local laws and regulations.  Given the trend toward utilization of central review boards for multicenter trials, a better understanding of single institution review board assessment processes are needed.

 Objective: To explore how local context assessments in multicenter trials are made by single institution review boards.

Methods: We used a mixed methods approach to explore attitudes and perceptions of key stakeholders.  We elicited stakeholder perspectives by observing, and audiotaping IRB deliberations of trials conducted under exception from informed consent (EFIC). In-depth semi-structured interviews (n=26) and an online survey (n=80, response rate=13%) were conducted of IRB stakeholders (IRB members, central review board members, regulatory officials, etc.). Two authors independently reviewed the observations and interview transcripts to identify meaningful statements, which were grouped into codes and broader themes.  Descriptive statistics were performed on the survey results.

Results: Deliberations related to local context highlighted the importance of taking into consideration: scientific rigor, community consultation and public disclosure process, as well as local laws/regulations, weighing relative benefit vs. risk, medical standards/practices, concerns of local groups, prior experiences with investigators and within the institution.  Themes from interviews underscored the important role investigators, and IRB community members are expected to play in knowing the local population and community. Top reasons for considering local context included: knowing about community concerns, showing respect for local public, and the influence of local laws/ordinances on clinical care.

Conclusion: Local context assessment provides a mechanism to ensure research and investigators are perceptive to the concerns and impact on the broader community. A wide variety of factors are considered. To further inform central review processes, future research is needed to differentiate which factors are essential for a high-quality local context assessment.   


Does Enhancing Individual Choice and Control Promote Freedom? Challenges in Contemporary Bioethics

Bishop Lecture Keynote Presenter: Barbara Koenig, PhD
 

Over the past three decades, the discipline of bioethics has advocated for enhanced patient choice and control over a range of medical decisions, from care near the end of life to participation in clinical research. Using two current policy challenges in California—1) the advent of legally sanctioned medical aid in dying and, 2) efforts to share UC Health “big data” from the electronic health record in research with private sector partners—Professor Koenig will explore how current bioethics practices may unintentionally and ironically impede our shared goals of promoting human freedom.

 

About Us

About CBSSM

The Center for Bioethics and Social Sciences in Medicine (CBSSM) is supported by the University of Michigan Medical School Dean's Office, the Office of Clinical Affairs, and the Department of Internal Medicine. CBSSM is directed by Dr. Reshma Jagsi, MD, DPhil. CBSSM was established in July 2010 at the University of Michigan Medical School through the merger of the Bioethics Program with the Center for Behavioral and Decision Sciences in Medicine (CBDSM).

Mission

The mission of CBSSM is to be the premier intellectual gathering place of clinicians, social scientists, bioethicists, and all others interested in improving individual and societal health through scholarship and service.

CBSSM is a multidisciplinary unit integrating bioethics with key social science disciplines. CBSSM acts as a "home" for anyone interested in applying empirical social science methods to improve health. The primary research interests of CBSSM faculty focus on five overarching themes:

  • Clinical and research ethics
  • Health communication and decision-making
  • Medicine and society
  • Health, justice and community
  • Genomics, health and society

CBSSM attracts scholars from across departmental and disciplinary boundaries and in so doing, provides fertile ground for new synergies.  Our team includes:

  • Social and cognitive psychologists
  • Behavioral economists
  • Clinicians from many specialties
  • Bioethicists
  • Decision scientists
  • Survey methodologists
  • Sociologists
  • Public health researchers

Currently, CBSSM is housed in the North Campus Research Complex in Ann Arbor. Faculty investigators, project managers, and research associates are supported by a core administrative and financial staff. CBSSM gives considerable attention to training the next generation of interdisciplinary scholars, offering support to junior investigators who can collaborate with seasoned researchers in an umbrella organization.

 

CBSSM Colloquium 2016-- call for abstracts

2016 CBSSM Research Colloquium – University of Michigan

 

Call for Abstracts

 

The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium will be held Wednesday, April 27, 2016 at the Founders Room, Alumni Center, 200 Fletcher Street, Ann Arbor, MI 48109.

The CBSSM Research Colloquium will feature the Bishop Lecture in Bioethics as the keynote address.  This year CBSSM is delighted to announce that William Dale, MD, PhD will present the Bishop Lecture with a talk entitled: "Why Do We So Often Overtreat, Undertreat, and Mistreat Older Adults with Cancer?"

William Dale, MD, PhD is Associate Professor of Medicine and Chief, Section of Geriatrics & Palliative Medicine & Director, SOCARE Clinic at the University of Chicago. A geriatrician with a doctorate in health policy and extensive experience in oncology, Dr. Dale has devoted his career to the care of older adults with cancer -- particularly prostate cancer. Dr. Dale has a special interest in the identification and treatment of vulnerable older patients who have complex medical conditions, including cancer. He is actively researching the interactions of cancer therapies with changes associated with aging.
 

 

Abstract submissions are welcome from all disciplines both within UM, as well as other institutions. CBSSM is an interdisciplinary center focusing on bioethics and social sciences in medicine. Our research program areas of interest include:

  • Clinical and Research Ethics - committed to empirical research in ethics (what some have called empirical ethics) by providing an evidence base for informed policy and practice.
  • Health Communication and Decision Making – using techniques from basic and applied research, determines the best practices for communicating health information to patients.
  • Medicine and Society - examines the way health care and bioethics are influenced by social structures and cultural ideas.
  • Health, Justice, and Community - aims to improve knowledge, understanding and practice in resource allocation and distributive justice, ethics of health policy (public and private) and community engagement, with the overarching goal of improving health equity.
  • Genomics, Health, and Society - examines the ethical, social and behavioral implications of advances in genomics.

For more information about our program areas: http://cbssm.med.umich.edu/


Submission Details: (Form is below)

  • Abstracts should contain a title, followed by the names and designations of all contributing authors and the contact details of the corresponding author.
  • Abstracts are to be a maximum of 300 words in length (exclusive of title and author information).
  • Presentations should last no more than 20 minutes, with an additional 5 minutes for questions.  The total time allotted is therefore 25 minutes per presentation. 
  • Abstracts should be submitted on the attached Abstract Submission form.  Submit abstracts via email to Kerry Ryan, kryanz@med.umich.edu. If you have questions about the abstract, please contact CBSSM at 734-615-8377 or email Kerry Ryan.
  • Deadline for abstract submission is Friday, March 11, 2016.
  • Notification:  Applicants will be notified by Friday, March 25, 2016.


Tentative Schedule for the Colloquium:


9:00-10:30 Presentations
10:45-12:00 Bishop Lecture:  William Dale, MD, PhD
12:00-1:15 Lunch
1:15-4:30 Presentations

Click here for Abstract Submission Form.

Funded by : University of North Carolina, Chapel Hill

Funding Years: 2015-2016

 

PI: Sarah Hawley, PhD. MPH.

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