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Thu, October 26, 2017

In a new analysis in Health Affairs, CBSSM's Jeffrey Kullgren and fellow researchers found that while the "Choosing Wisely" campaign to reduce overtesting and overtreatment is off to a strong start, more work is still needed to cut back on low-value care.

CBSSM Seminar: Jan Van den Bulck, PhD

Tue, November 28, 2017, 3:00pm
Location: 
NCRC, Building 16, Room 266C

Jan Van den Bulck, PhD
Professor, Communication Studies

Topic:
"Are the media (re-)defining how we interact with each other and with the world?

We know everything there is to know about people we have never even met. Through social media, we follow their every move. We even know their pets. Our media use interferes with healthy sleep, family meals, or even our work. Our children need levels of self-control to manage distractions that threaten their schoolwork. Or do they?"

Tue, November 28, 2017

In a study published in JAMA Internal Medicine, Jeff Kullgren and co-authors found that few individuals enrolled in High-Deductible Health Plans (HDHPs) in the United States are engaging in consumer behaviors.

Funded by VA Health Services Research and Development Career Development Award

Funding Years: 2015-2019

Heart attack and stroke, which together are called cardiovascular disease, cause over 1/3 of all deaths in VA patients. The current guidelines for the prevention of these conditions focus on lowering patients'blood pressure and cholesterol levels. A new treatment strategy, which I call benefit-based tailored treatment, that instead guides treatment decisions based on the likelihood that a medication would prevent a heart attack or stroke could prevent more cardiovascular disease, with lower medication use, and be more patient centered. The purpose of this Career Development Award is to develop and assess tools and approaches that could enable the implementation of benefit-based tailored treatment of cardiovascular disease, in particular a decision support tool and educational program for clinicians and a performance profiling system. The decision support tool will enable better care by showing clinicians patient-specific estimates of the likelihood that their medication decisions will prevent a cardiovascular disease event. The performance profiling system will encourage better care by assessing the quality of care provided at VA sites and in PACT teams based on how well the medical care provided follows this treatment strategy. The project will have three aims:
Aim 1 : In the first aim, I will seek to understand clinicians'and patients'perceptions of and receptivity to the use of benefit-based tailored treatment for cardiovascular disease. Information gained from qualitative research with clinicians will help assess and improve the usability and effectiveness of the decision support tool and educational program for clinicians, along with the acceptability of the treatment strategies in general. Information gained from focus groups with patients will help learn their priorities in cardiovascular disease prevention, to help identify ways to make the interventions and their assessments more patient-centered.
Aim 2 : In the second aim, the decision support tool and educational program will be assessed in a real-world randomized pilot study involving thirty clinicians. Half of the clinicians will be provided the decision support tool and education intervention for ten patients each, the other half will receive a traditional quality improvement program and treatment reminders. The study will have formative goals of ensuring that clinicians and patients believe the tool is valuable and does not disrupt care processes or workflow for anyone in the PACT team. This will be studied with qualitative and survey assessments. The primary summative outcome will be the influence of the intervention on clinicians'treatment decisions. Secondary outcomes will assess patients'satisfaction with their visits and their clinicians.
Aim 3 :
The third aim will develop and evaluate a novel performance measurement system based on benefit- based tailored treatment. First, the performance profiling system will be developed. Then the profiling system's ability to reliably differentiate high quality from low-quality care will be evaluated.

PI: Jeremy Sussman

Carl Schneider, JD

Faculty

Carl E. Schneider is the Chauncey Stillman Professor for Ethics, Morality, and the Practice of Law and is a Professor of Internal Medicine. He was educated at Harvard College and the University of Michigan Law School, where he was editor in chief of the Michigan Law Review. He served as law clerk to Judge Carl McGowan of the United States Court of Appeals for the District of Columbia Circuit and to Justice Potter Stewart of the United States Supreme Court. He became a member of the Law School faculty in 1981 and of the Medical School faculty in 1998. 

Last Name: 
Schneider

Funded by: NIH

Funding Years: 2016-2021

 

There is a fundamental gap in understanding how Mild Cognitive Impairment (MCI) influences treatment and Decision Making for serious illnesses, like Cardiovascular disease (CVD), in older patients. Poor understanding of Clinical Decision Making is a critical barrier to the design of interventions to improve the quality and outcomes of CVD care of in older patients with MCI. The long-term goal of this research is to develop, test, and disseminate interventions aimed to improve the quality and outcomes of CVD care and to reduce CVD-related disability in older Americans with MCI. The objective of this application is to determine the extent to which people with MCI are receiving sub-standard care for the two most common CVD events, Acute myocardial infarction (AMI) and acute ischemic stroke, increasing the chance of mortality and morbidity in a population with otherwise good quality of life, and to determine how MCI influences patient preferences and physician recommendations for treatment. AMI and acute ischemic stroke are excellent models of serious, acute illnesses with a wide range of effective therapies for acute management, Rehabilitation, and secondary prevention. Our central hypothesis is that older Adults with MCI are undertreated for CVD because patients and physicians overestimate their risk of dementia and underestimate their risk of CVD. This hypothesis has been formulated on the basis of preliminary data from the applicants' pilot research. The rationale for the proposed research is that understanding how patient preferences and physician recommendations contribute to underuse of CVD treatments in patients with MCI has the potential to translate into targeted interventions aimed to improve the quality and outcomes of care, resulting in new and innovative approaches to the treatment of CVD and other serious, acute illnesses in Adults with MCI. Guided by strong preliminary data, this hypothesis will be tested by pursuing two specific aims: 1) Compare AMI and stroke treatments between MCI patients and cognitively normal patients and explore differences in Clinical outcomes associated with treatment differences; and 2) Determine the influence of MCI on patient and surrogate preferences and physician recommendations for AMI and stroke treatment. Under the first aim, a health services research approach- shown to be feasible in the applicants' hands-will be used to quantify the extent and outcomes of treatment differences for AMI and acute ischemic stroke in older patients with MCI. Under the second aim, a multi-center, mixed-methods approach and a national physician survey, which also has been proven as feasible in the applicants' hands, will be used to determine the influence of MCI on patient preferences and physician recommendations for AMI and stroke treatment. This research proposal is innovative because it represents a new and substantially different way of addressing the important public health problem of enhancing the health of older Adults by determining the extent and causes of underuse of effective CVD treatments in those with MCI. The proposed research is significant because it is expected to vertically advance and expand understanding of how MCI influences treatment and Decision Making for AMI and ischemic stroke in older patients. Ultimately, such knowledge has the potential to inform the development of targeted interventions that will help to improve the quality and outcomes of CVD care and to reduce CVD-related disability in older Americans.

PI: Deborah Levine

CO(s): Darin Zahuranec, MD & Ken Lenga, MD. PhD.

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.

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
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.

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.

 

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