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2016 CBSSM Research Colloquium and Bishop Lecture (William Dale, MD, PhD)

Wed, April 27, 2016, 8:30am
Location: 
Founders Room, Alumni Center, 200 Fletcher St., Ann Arbor, MI

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

The CBSSM Research Colloquium featured the Bishop Lecture in Bioethics as the keynote address.  William Dale, MD, PhD presented 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.

 

The 2016 Research Colloquium Presentation Schedule:

  •     8:30 AM -- Check in & refreshments
  •     9:00 AM -- Welcome
  •     9:05 AM -- Katrina Hauschildt, MA, PhD Candidate, Department of Sociology: "Language and Communication as Professionalization Projects in Clinical Ethics Consultation"
  •     9:30 AM -- Devan Stahl, PhD, Assistant Professor of Clinical Ethics, MSU: "Is there a right not to know?"
  •     9:55 AM -- Chithra Perumalswami, MD MSc, Robert Wood Johnson Foundation/Veterans Affairs Clinical Scholar: "Insurance Status of Elderly Americans and Location of Death"
  •     10:20 AM -- Break
  •     10:35 AM -- William Dale, MD, PhD, 2016 Bishop Lecture in Bioethics: "Why Do We So Often Overtreat, Undertreat, and Mistreat Older Adults with Cancer?"
  •     12:00 PM -- Lunch
  •     12:45 PM -- Lauren B. Smith, M.D., Associate Professor, Department of Pathology/Ginny Sheffield, UM Medical Student (M3): "Special treatment for the VIP patient:  Is it ethical?  Is it dangerous?"
  •     1:10 PM -- Naomi Laventhal, MD, MA, Assistant Professor, Department of Pediatrics and Communicable Diseases: "Roman Charity Redux: The Moral Obligations of the Breastfeeding Physician"
  •     1:35 PM -- Archana Bharadwaj, Graduate Student, UM School of Public Health: "Patient understanding and satisfaction regarding the clinical use of whole genome sequencing: Findings from the MedSeq Project"
  •     2:00 PM -- Kayte Spector-Bagdady, JD, MBioethics, CBSSM Postdoctoral Research Fellow: "Direct‐to‐Consumer Biobanking"
  •     2:25 PM -- Break
  •     2:40 PM --Panel Presentation (Susan Goold, MD, MHSA, MA & colleagues) : "Community engagement in setting research priorities: Representation, Participation and Evaluation"
    • Why (and how) was CBPR supported in DECIDERS?
    • How were communities represented in DECIDERS decision making?
    • Why and how was the partnership evaluated?
    • How were the 47 focus groups engaged in setting research priorities?

Subjective Numeracy Scale

The Subjective Numeracy Scale (SNS) is a self-report measure of perceived ability to perform various mathematical tasks and preferences for the use of numerical versus prose information. The SNS has been validated against objective numeracy measures and found to predict comprehension of risk communications and ability to complete utility elicitations.

The 8-item scale contains no mathematics questions and has no correct or incorrect answers. Instead, it consists of 4 questions asking respondents to assess their numerical ability in different contexts and 4 questions asking them to state their preferences for the presentation of numerical and probabilistic information. The SNS is both reliable and highly correlated with the Lipkus, Samsa & Rimer (2001) numeracy measure, and it has been validated in both risk communication and utility elicitation domains.

For a PDF version of this document and the SNS instrument, click here: Subjective Numeracy Scale PDF.  

Please contact Angie Fagerlin for versions in Dutch, Japanese, Norwegian, Portuguese, and Spanish.

SNS Questions

For each of the following questions, please check the box that best reflects your answer:

  • How good are you at working with fractions? (Not at all good – Extremely good)
  • How good are you at working with percentages? (Not at all good – Extremely good)
  • How good are you at calculating a 15% tip? (Not at all good – Extremely good)
  • How good are you at figuring out how much a shirt will cost if it is 25% off? (Not at all good – Extremely good)
  • When reading the newspaper, how helpful do you find tables and graphs that are parts of a story? (Not at all helpful – Extremely helpful)
  • When people tell you the chance of something happening, do you prefer that they use words ("it rarely happens") or numbers ("there's a 1% chance")? (Always prefer words – Always prefer numbers)
  • When you hear a weather forecast, do you prefer predictions using percentages (e.g., “there will be a 20% chance of rain today”) or predictions using only words (e.g., “there is a small chance of rain today”)? (Always prefer percentages – Always prefer words)
  • How often do you find numerical information to be useful? (Never – Very often)

Scoring Instructions

All questions use 6-point Likert-type scales with endpoints as marked. Response values increase left to right (1-6). Scoring is based on these values, except Question 7 is reverse coded (6-1) for consistency.

  • SNS: Average rating across all 8 questions (w/ Q7 reverse coded)
  • SNS ability subscale: Average rating on Questions 1-4
  • SNS preference subscale: Average rating on Questions 5-8 (w/ Q7 reverse coded)

To cite the scale, please use the following reference:

Fagerlin, A., Zikmund-Fisher, B.J., Ubel, P.A., Jankovic, A., Derry, H.A., & Smith, D.M.  Measuring numeracy without a math test: Development of the Subjective Numeracy Scale (SNS). Medical Decision Making, 2007: 27: 672-680.

In any discussions about the validation of the scale, please use the following reference:

Zikmund-Fisher, B.J., Smith, D.M., Ubel, P.A., Fagerlin, A.  Validation of the subjective numeracy scale (SNS): Effects of low numeracy on comprehension of risk communications and utility elicitations. Medical Decision Making, 2007: 27: 663-671.

2018 Bishop Lecture featuring Barbara Koenig, PhD

Tue, May 01, 2018, 11:15am
Location: 
Henderson Room, Michigan League, 911 N. University Avenue, Ann Arbor, MI

The 2018 Bishop Lecture in Bioethics was presented by Barbara Koenig, PhD, Professor of Bioethics and Medical Anthropology and Director of UCSF Bioethics at the University of California, San Francisco. Professor Koenig presented a talk entitled, " Does Enhancing Individual Choice and Control Promote Freedom? Challenges in Contemporary Bioethics." The Bishop Lecture serves as the keynote address during the CBSSM Research Colloquium.

Abstract: 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.

Barbara A. Koenig, PhD is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. She is the Director of “UCSF Bioethics,” a nascent program that spans ethics research, clinical ethics, and ethics education across the university’s four professional schools. Prof. Koenig pioneered the use of empirical methods in the study of ethical questions in science, medicine, and health. Prof. Koenig’s current focus is emerging genomic technologies, including biobanking policy and using deliberative democracy to engage communities about research governance. Her work has been continuously funded by the National Institutes of Health since 1991. Currently, she: 1) directs the ELSI component of a NICHD award focused on newborn screening in an era of whole genome analysis, 2) is P.I. of UCSF’s Program in Prenatal and Pediatric Genomic Sequencing (P3EGS), part of the CSER2 national network, and, 3) is supported by NCI to conduct an “embedded ethics” study of the Athena “Wisdom” PCORI-funded clinical trial of genomic risk-stratified breast cancer prevention. Previously, she directed an NHGRI-funded “Center of Excellence” in ELSI Research. Prof. Koenig was the founding executive director of the Center for Biomedical Ethics at Stanford University; she created and led the Bioethics Research Program at the Mayo Clinic in Rochester, Minn. She received her Ph.D. from the University of California, Berkeley and San Francisco joint program in Medical Anthropology. She is an active participant in policy, having served on the ethics committee that advises the director of the CDC and the Department of Health and Human Services “Secretary’s Advisory Committee on Genetic Testing.” She recently served on a state-wide “Health Data Governance Task Force” which advised UC’s president.

Click here for the video recording of the 2018 Bishop Lecture.

Funded by: NIH

Funding Years: 2016-2021

The development of Learning health systems is causing radical transformation of the environment within which the NCI pursues its Mission; understanding the Ethical and social implications of these changes is of paramount importance. In rapid Learning systems (RLS), routinely collected Patient data drive the process of discovery, which in turn becomes a natural outgrowth of clinical care. As the Institute of Medicine has noted, such systems have substantial promise for improving the quality of care and research, and ultimately the value of health care. As such systems develop, the blurring of the current distinction between clinical practice, quality of care, and research necessitates careful consideration of Ethical implications. As RLSs are in their infancy, it is critical to conduct research to generate informed and considered Patient perceptions of the ethical implementation of such systems, particularly regarding ways to ensure respect for Patient autonomy and privacy, including best approaches for informing participants and governance of data use, in order to realize the potential benefits of these systems. Therefore, we propose an innovative study that uses cutting edge methods of deliberative democracy to generate considered and informed opinions of cancer Patients, leveraging a unique opportunity to evaluate Patient experiences during the roll-out of a real-world RLS. Specifically, the American Society of Clinical Oncology (ASCO) has developed a real-world Oncology RLS known as CancerLinQ. CancerLinQ is being implemented in 15 vanguard practices over the next year, and the approach to Patient notification/consent and data governance in this System is actively evolving. We propose an empirical Investigation with two distinct approaches and aims, in collaboration with ASCO and its vanguard practices. First, we will use a deliberative democracy approach to determine the range of informed and considered individual and group opinions and recommendations of cancer Patients on the optimal approach for obtaining Consent and appropriate uses of information routinely collected in the course of medical care as part of a RLS that seeks to improve quality and advance research. Second, following CancerLinQ roll-out, we will survey Patients experiencing the real-world Implementation of this RLS in order to evaluate their knowledge and perceptions of that System. Conducting the proposed work in parallel with the development of a real-world RLS provides an opportunity to directly inform the development and Implementation of a national learning system that will ultimately impact tens of thousands of Patients, and it also allows for the consideration of real- life rather than purely hypothetical scenarios in ways that increase the likelihood that these investigations will yield insights that are directly applicable in other settings. the findings will have substantial relevance to the research Mission of the NCI, as Oncology Learning systems are fundamentally altering the context for research across the spectrum of cancer causation, diagnosis, Prevention, treatment, and survivorship care.

PI: Reshma Jagsi, MD. PhD. 

CO(s): Raymond De Vries, PhD. & Sarah Hawley, PhD, MPH

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 3421 Yelp reviews.  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.

 

Tue, January 03, 2017

Reshma Jagsi was lead author on a recent study that found many patients with breast cancer unnecessarily choose double mastectomy. This study found that many patients consider contralateral prophylactic mastectomy (CPM), but their knowledge about the procedure is low and discussions with surgeons appear to be incomplete. CPM use is substantial among patients without clinical indications but is lower when patients report that their surgeon recommended against it. The study authors stress that more effective physician-patient communication about CPM is needed to reduce potential overtreatment.

CBSSM faculty, Sarah Hawley, was a co-author on this study.

Wed, February 01, 2017

Sarah Hawley and Reshma Jagsi are co-authors on two studies of the impact of doctor-patient communication on patients' perceptions of their breast cancer recurrence risk. They found that breast cancer patients commonly overestimate their risk of recurrence, which was a negative impact on their quality of life. The two studies were highlighted in a MHealth Lab Report. Brian Zikmund-Fisher was also co-author on one of these studies.

Jacquelyn Miller, MA

Research Associate

Jackie re-joined CBSSM in spring of 2017. She currently works with Drs. Lesly Dossett and Tom Valley on projects related to the worries and concerns of those with loved ones in the ICU, feedback and disclosure of errors that have occurred in other hospital systems, and opioid prescribing after cancer surgery. She has a BS in Environmental Policy and Developing Country Studies (University of Michigan, School of Natural Resources and Environment) and a MA in Sociology, specializing in environmental justice, feminist sociology, and science and technology studies (Michigan State University).

Last Name: 
Miller

Teach-Out Course: Reach Out and RELATE: Communicating and Understanding Scientific Research

Fri, May 05, 2017, 8:00am
Location: 
Online

About this course
Everyone - non-scientists and scientists alike - has some form of expertise, but communicating across a gap in knowledge or experience is challenging. In this Teach-Out, we address this challenge by helping participants to develop core communication skills and more effectively communicate with one another. For more information or to enroll, click here.

What you'll learn

  • Understand why science communication is both important and challenging
  • Develop strategies to effectively bridge communications between public audiences and scientific researchers
  • Understand expert perspectives on different areas of public engagement with science
  • Shape a compelling, message-focused STEM narrative for a specific audience
  • Discuss important issues in science communication with others


Meet the instructors

Elyse L. Aurbach PhD
Co-Founder and Co-Director of RELATE

Brian J. Zikmund-Fisher PhD
Associate Professor of Health Behavior and Health Education

Brandon Patterson MS
Co-Director of RELATE

Katherine E. Prater PhD
Co-Founder and Co-Director of RELATE
 

Mon, April 17, 2017

A new piece by Brian Zikmund-Fisher and former CBSSM post-doc, Laura Scherer is out in the Conversation, "Maximizers vs. minimizers: The personality trait that may guide your medical decisions – and costs." They developed and validated a 10-item questionnaire that assesses a person’s maximizing or minimizing tendencies on a scale, from one (strong minimizing) to seven (strong maximizing). Across four studies, they found this difference predicts health care use across a range of medical interventions and health problems, from cancer screening preferences to vaccination. They hope that identifying variations in maximizing or minimizing tendencies may be useful in trying to address both overuse and underuse in health care.

Research Topics: 

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