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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.

 

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

Funding Years: 2014.

Promoting physical activity and decreasing sedentary behavior are key goals in the fight against cancers; physical activity is associated with lower risk of several cancers [1-10], and lower overall morbidity and mortality [11-26]. Thus, theory-driven initiatives to change these behaviors are essential [1-10, 26-40]. PQ#3 highlights the necessity for new perspectives on the interplay of cognitive and emotional factors in promoting behavior change. Current theories, which focus primarily on predictors derived from self-report measures, do not fully predict behavior change. For example, recent meta-analyses suggest that on average, variables from the Theory of Planned Behavior account for ~27% of the variance in behavior change [41, 42]. This limits our ability to design optimally effective interventions [43], and invites new methods that may explain additional variance. Our team has shown that neural activation in response to health messages in hypothesized neural regions of interest can double the explained variance in behavior change, above and beyond self-reports of attitudes, intentions, and self-efficacy [44, 45]. We now propose a next leap, inspired by PQ3, to identify how cognitive and affective processes interact in the brain to influence and predict behavior change. Our core hypothesis is that the balance of neural activity in regions associated with self-related processing versus defensive counterarguing is key in producing health behavior change, and that self-affirmation (an innovative approach, relatively new to the health behavior area [46]) can alter this balance. Self-affirmation theory [47] posits that people are motivated to maintain a sense of self-worth, and that threats to self-worth will be met with resistance, often i the form of counterarguing. One common threat to self-worth occurs when people are confronted with self-relevant health messages (e.g. encouraging less sedentary behavior in overweight, sedentary adults). This phenomenon speaks to a classic and problematic paradox: those at highest risk are likely to be most defensive and least open to altering cancer risk behaviors [48]. A substantial, and surprisingly impressive, body of evidence demonstrates that affirmation of core-values (self-affirmation priming) preceding messages can reduce resistance and increase intervention effectiveness [46, 49-53]. Uncovering neural mechanisms of such affirmation effects [46], has transformative potential for intervention design and selection. To test our conceptual assumptions and core hypothesis we will: (1) Identify neural signals associated with processing health messages as self-relevant versus counterarguing; (2) Test whether self-affirmation alters the balance of these signals; (3) Use these neural signals to predict physical activity behavior change, above and beyond what is predicted by self-report measures alone. Our approach is innovative methodologically (using fMRI to understand and predict behavior change), and conceptually (self-affirmation may dramatically increase intervention effectiveness). Benchmarks will include objectively measured decreases in sedentary behavior in affirmed vs. control subjects (using accelerometers), and increases in predictive capacity afforded by neuroimaging methods, compared to self-report alone.

PI(s): Thad Polk

Co-I(s): Lawrence An, Sonya Dal Sin, Kenneth Resnicow, Victor Strecher

Announcement of Position: Clinician Ethicist

Announcement of Position: Clinician Ethicist


Background
The Program in Clinical Ethics within the Center for Bioethics and Social Sciences in Medicine (CBSSM) represents an expansion of existing services designed to promote a culture of patient-centered excellence by developing a comprehensive set of ethics-related activities. The aims of this program are to: liaise with and provide support to the adult and pediatrics ethics committees; streamline clinical ethics consultation; assist with ethics-related policy development on a regular and proactive basis; organize and administer structured educational programs in clinical ethics; and coordinate empiric research with relevance to clinical ethics within CBSSM.


Program Organization
The Program in Clinical Ethics is co-directed by the chairs of the adult and pediatric ethics committees and consultation services, Christian J. Vercler, MD MA and Andrew G. Shuman, MD. A dedicated clinician ethicist will manage the program on a daily basis. A cadre of eight faculty ethicists will rotate on service throughout the year and work closely with the clinician ethicist. Trainees and students will rotate as well. Dedicated administrative support will be organized through CBSSM.


Position
One individual will serve as the program’s clinical ethicist. This individual will serve as the “first responder” and contact person for all ethics consults during business hours, ensure continuity with consults, and work in conjunction with faculty ethicists. The role will include arranging team/family meetings, ensuring follow-ups on all consults, and arranging additional consultations as needed for selected cases. He/she will also regularly review relevant institutional policies and attend all ethics committee meetings. Another major component of this role will be to organize and participate in educational efforts and preventative ethics rounds. This position will provide $50,000 of direct salary support annually, to be distributed and allocated in conjunction with their home department. The initial appointment will last two years and is renewable.


Qualifications
Candidates are expected to be employees or faculty at UMHS with a master’s or equivalent terminal degree in their field; any professional background is acceptable. Direct experience with clinical ethics consultation is required. Familiarity with ethics education and related clinical research would be helpful. Excellent organizational and communication skills across multidisciplinary medical fields are required. Candidates are expected to have qualifications that meet the standards outlined by The American Society for Bioethics and Humanities (ASBH) for accreditation for clinical ethics consultants.


Application Process
Candidates will be vetted, interviewed and chosen by a nomination committee. Candidates are asked to submit:

  • Curriculum vitae or resume
  • One page maximum summary of (1) education/training related to ethics consultation; (2) clinical ethics consultation experience; and (3) motivation/interest in the position
  • Letter of support from Department Chair/Division Head/Center Director or equivalent
  • Submit formal application via email to: valkahn@med.umich.edu


Timeline

  • Application is due December 11, 2015 with interviews shortly thereafter
  • Appointment will take effect January 1, 2016


Contacts

  • Co-Directors of the Program in Clinical Ethics: Christian J. Vercler, MD MA & Andrew G. Shuman, MD
  • Administrative contact: Valerie Kahn – valkahn@med.umich.edu 734 615 5371

2018 Bishop Lecture featuring Barbara Koenig, PhD

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

The 2018 Bishop Lecture in Bioethics will be 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 will present a talk entitled, " Does Enhancing Individual Choice and Control Promote Freedom? Challenges in Contemporary Bioethics." The Bishop Lecture will 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.

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.

Wed, February 15, 2017

According to a study by Reshma Jagsi and colleagues, doctors often fail to recommend genetic testing for breast-cancer patients, even those who are at high risk for mutations linked to ovarian and other cancers. They surveyed 2,529 breast-cancer patients and found that although two-thirds of the women reported wanting genetic testing, less than a third actually got it. About 8 in 10 women at highest risk for BRCA mutations — because of family history or ancestry — said they had wanted testing, but only a little more than half received it.

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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