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CBSSM Seminar: Michele Gornick, PhD

Thu, January 15, 2015, 3:00pm to 4:00pm
Location: 
NCRC 16-266C

Michele Gornick, PhD

VA HSRD Fellow & CBSSM Research Investigator

Title: The public’s preferences for the return of secondary findings identified through genome sequencing: Information and deliberation make a difference

Summary: Genomic sequencing is becoming a part of clinical practice. Existing studies are limited and conclude that people would like unrestricted access to all of their genetic information. However, we do not know the extent to which respondents in these studies took into account the complex scientific and ethical issues that attend genome sequencing. In order to address this gap, we organized a deliberative democracy (DD) session to educate members of the public on genome sequencing, to engage them in dialogue about the benefits and risks of the clinical implementation of this technology, and to elicit their informed perspectives about policies governing the return of secondary findings.

PIHCD: Kevin Kerber and Will Meurer

Thu, November 19, 2015, 2:00pm
Location: 
B004E NCRC Building 16

Dr. Kevin Kerber and Dr. Will Meurer will be presenting an implementation trial on the topic of diagnosis and treatment of benign positional vertigo in the emergency department. At this meeting, they will be discussing and seeking input regarding plans for the in-person provider training presentation. Part of the intervention is a website to educate and motivate providers. Please review the website prior to the meeting.

To access the educational website please go to www.dizztinct.com and sign up with your uniqname@med.umich.edu  email address and create a password.  After signing up, you'll receive an email with a link to click, in order to activate your account.

If you do not have a med.umich.edu email address, you can still get access by contacting Patty Johnson at johnspat@med.umich.edu

CBSSM Seminar: Julie Wright Nunes, MD, MPH

Wed, May 17, 2017, 3:00pm
Location: 
NCRC, Building 16, Room 266C

Julie Wright Nunes, MD, MPH
Assistant Professor, Internal Medicine

Title: Patient Education and Care: Challenges and Opportunities in Chronic Kidney Disease

Abstract: Twenty million people, or 20% of U.S. adults ages 60 and older, have chronic kidney disease (CKD). CKD is a significant public health threat carrying high risk of morbidity, mortality, and renal failure. Health behavior theory suggests that patient motivation and healthy behavior change require patients to have knowledge of their chronic condition, as well as the self-efficacy and skills to do what is needed to stay healthy. The chronic care model promotes early patient engagement in care. Yet, less than 20% of  patients with CKD are aware of their diagnosis. Even patients who are aware often do not understand the implications of their CKD diagnosis or what they need to do to optimize their health. Dr. Wright Nunes will discuss her research aimed to develop, test, and disseminate sustainable patient-centric education and coaching support interventions to improve quality of care and outcomes in patients who have CKD.

CBSSM Seminar: Peter Jacobson, J.D., M.P.H.

Tue, October 10, 2017, 3:00pm
Location: 
NCRC, Building 16, Room 266C

Peter Jacobson, J.D., M.P.H.
Professor of Health Law and Policy
Director, Center for Law, Ethics, and Health

Title:  Addressing Health Equity Through Health in All Policies Initiatives.

Scholars and public health advocates have expressed optimism about the potential for Health in All Policies (HiAP) initiatives to improve both health equity and population health. HiAP is a collaborative approach across multiple sectors. In a qualitative study to assess these concepts, we found considerable variation across the sites on: how HiAP and equity initiatives are defined and governed; the integration of equity as a core goal; institutional capacity; and the determination of actual policy changes. We found a general migration from a HiAP-centered strategy to one based more on health equity. Regardless of the specific nomenclature, the implementation focus was directed more toward changing practices than policies.

 

In the January-February issue of IRB: Ethics & Human Research, Scott Y.H. Kim, Raymond de Vries, Renee Wilson, Sonali Parnami, Samuel Frank, Karl Kieburtz, and Robert G. Holloway present results of a study about the therapeutic orientation of research participants.

The authors examined the relationship between understanding and appreciation of randomization probabilities in 29 individuals recruited for a sham surgery controlled intervention study in Parkinson's disease. 83% provided the correct, quantitative answer to the understanding question; of those, one group (55%) answered the appreciation question correctly using quantitative terms, whereas the remaining group (45%) provided only qualitative comments.

The therapeutic orientation of research participants raises concerns about the adequacy of consent because such an orientation could cloud understanding of key elements of research. Further, even if participants understand (i.e., intellectually comprehend) elements of research, they may not appreciate them because they fail to apply such facts to themselves.

Study participants frequently made "unrealistic" probability statements, even while providing correct quantitative responses. Analysis showed that this apparent "irrationality" may in fact hide a deeper rationality -- namely, conversational rationality, which is part of the contextual nature of meaning conveyed in everyday language. Ignoring conversational rationality may lead to wrongly labeling research subjects as irrational. Click here for more information.

Michele Heisler, MD, MPA

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.

 

Brian Zikmund-Fisher,  Angela Fagerlin, Nicole Exe, and Knoll Larkin have been involved in the Visualizing Health Project, which has recently launched an online style guide  for communicating health data. You can check it out at: www.vizhealth.org

The Visualizing Health project was a short and highly intense project funded by the Robert Wood Johnson Foundation designed to push the envelope both in considering visual designs for communicating health risk data and in developing iterative research approaches for testing them. The project involved a large team combining researchers and staff from both the University of Michigan's Center for Health Communications Research and the Center for Bioethics and Social Sciences in Medicine. The UM team then worked closely on a week by week basis with Thomas Goetz (former editor of Wired magazine) who envisioned the project, Tim Leong (graphic designer, author of Super Graphic), Andrea Ducas from the Robert Wood Johnson Foundation, and teams of graphic designers that Tim recruited.

They created 16 distinct visual data display tasks related to health risks, had teams of graphic designers develop display concepts, and iteratively tested these displays using multiple online survey methodologies. The resulting designs and data were then assembled in a project website that included all the images, plus commentary and additional features such as a design "wizard" to help guide users to visual displays that best fit their personal needs.

Also, see the Robert Wood Johnson Foundation Culture of health blog.

CBSSM Seminar: Jeff Kullgren, MD, MS, MPH

Wed, October 19, 2016, 3:00pm to 4:00pm
Location: 
NCRC Building 16, Conference Rm 266C

Jeff Kullgren, MD, MS, MPH
Assistant Professor, Internal Medicine

Consumer Behaviors among Americans in High-Deductible Health Plans 
More than 1 in 3 Americans with private health insurance now face high out-of-pocket expenditures for their care because they are enrolled in high-deductible health plans (HDHPs), which have annual deductibles of at least $1,300 for an individual or $2,600 for a family before most services are covered.  Though it is well known that HDHPs lead patients to use fewer health services, what is less known is the extent to which Americans who are enrolled in HDHPs are currently using strategies to optimize the value of their out-of-pocket health care spending such as (1) budgeting for necessary care, (2) accessing tools to select providers and facilities based on their prices and quality, (3) engaging clinicians in shared decision making which considers cost of care, and (4) negotiating prices for services.  Such strategies could be particularly helpful for people living with chronic conditions, who are even more likely to delay or forego necessary care when enrolled in an HDHP.  In this seminar we will examine these issues and review preliminary results from a recent national survey of US adults enrolled in HDHPs that aimed to determine how often these strategies are being utilized and how helpful patients have found them to be, which patients choose to use or not use these strategies and why, and identify opportunities for policymakers, health plans, and employers to better support the growing number of Americans enrolled in HDHPs.

Working Group

The Working Group provides a forum for project focused discussions and interdisciplinary collaborations in topics related to bioethics, health communication, decision making and any other topic that fits within the 5 domains of CBSSM.

Working group meetings provide an opportunity for investigators to receive feedback on research proposals, drafts of papers, grant applications, or any other aspects of projects at any stage of development. These sessions are to help move forward a project in any stage of its development. So if your project is in the works, in the planning stages, or perhaps it is still just an idea, you design the session and determine how to best solicit the help and support of your colleagues.
Some examples could be:

  • Outline sketch of specific aims for a grant. (Presenter would provide a one page summary before the session)
  • Outline of a proposed paper or paper in draft stage. (Discussion would be based on one page summary. Presenter would walk the group through the outline or draft, and solicit feedback on significance and coherence of ideas)
  • Determining a paper’s relevance. (Presenter could ask group members to read a paper, in order to discuss/determine if that paper is crucial to the project that the person has in mind-- different from a journal club exercise.)

This meeting is designed as an informal working group not a formal presentation.

The working group usually meets on Tuesdays or Wednesdays at 4pm in NCRC B16-266C. To be added to the email list, please contact Amy Lynn at lynnam@umich.edu OR join our email list.

 

 

 

 

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