Error message

The page you requested does not exist. For your convenience, a search was performed using the query news events news 2016 11 09.

Page not found

You are here

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

The Privileged Choices (Jan-08)

What's the difference between opting in and opting out of an activity? Who decides if people will be put automatically into one category or another? Click this interactive decision to learn how default options work.

Scenario 1

Imagine that you're a US Senator and that you serve on the Senate's Committee on Health, Education, Labor, and Pensions. The Infectious Diseases Society of America has come before your committee because they believe that too many health care workers are getting sick with influenza ("flu") each year and infecting others. As a result, your Senate committee is now considering a new bill that would require that all health care workers get annual influenza vaccinations ("flu shots") unless the worker specifically refuses this vaccination in writing.

Do you think you would support this bill for mandatory flu shots for health care workers?

  • Yes
  • No

Scenario 2

Imagine that you're the human resources director at a mid-sized company that's initiating an employee retirement plan. Management is concerned that many employees are not saving enough for retirement. They're considering a policy that would automatically deduct retirement contributions from all employees' wages unless the employee fills out and submits a form requesting exemption from the automatic deductions.

Do you think a policy of automatic retirement deductions is reasonable for your company to follow?

  • Yes 
  • No

Scenario 3

Organ transplants save many lives each year, but there are always too many deserving patients and too few organs available. To try to improve the number of organs available for donation, the state legislature in your state is considering a new policy that all people who die under certain well-defined circumstances will have their organs donated to others. The system would start in three years, after an information campaign. People who do not want to have their organs donated would be given the opportunity to sign a refusal of organ donation when they renewed their drivers' licenses or state ID cards, which expire every three years. Citizens without either of these cards could also sign the refusal at any drivers' license office in the state. This is a policy similar to ones already in place in some European countries.

Does this seem like an appropriate policy to you?

  • Yes 
  • No

How do your answers compare?

For many decisions in life, people encounter default options-that is, events or conditions that will be set in place if they don't actively choose an alternative. Some default options have clear benefits and are relatively straightforward to implement, such as having drug prescriptions default to "generic" unless the physician checks the "brand necessary" box. Others are more controversial, such as the automatic organ donation issue that you made a decision about.

Default options can strongly influence human behavior. For example, employees are much more likely to participate in a retirement plan if they're automatically enrolled (and must ask to be removed, or opt out) than if they must actively opt in to the plan. Researchers have found a number of reasons for this influence of default options, including people's aversion to change.

But default options can seem coercive also. So, an Institute of Medicine committee recently recommended against making organ donation automatic in the US. One reason was the committee's concern that Americans might not fully understand that they could opt out of donation or exactly how they could do so.

The policy scenarios presented to you here have been excerpted from a 2007 article in the New England Journal of Medicine titled "Harnessing the Power of Default Options to Improve Health Care," by Scott D. Halpern, MD, PhD, Peter A. Ubel, MD, and David A. Asch, MD, MBA. Dr. Ubel is the Director of the Center for Behavioral and Decision Sciences in Medicine.

This article provides guidance for policy-makers in setting default options, specifically in health care. Generally, default options in health care are intended to promote the use of interventions that improve care, reduce the use of interventions that put patients at risk, or serve broader societal agendas, such as cost containment.

In this NEJM article, the researchers argue that default options are often unavoidable-otherwise, how would an emergency-room physician decide on care for an uninsured patient? Many default options already exist but are hidden. Without either returning to an era of paternalism in medicine or adopting a laissez-faire approach, the authors present ways to use default options wisely but actively, based on clear findings in the medical literature.

Some examples of default policies that may improve health care quality:

  • routine HIV testing of all patients unless they opt out.
  • removal of urinary catheters in hospital patients after 72 hours unless a nurse or doctor documents why the catheter should be retained.
  • routine ventilation of all newly intubated patients with lung-protective settings unless or until other settings are ordered.

Drs. Halpern, Ubel, and Asch conclude, "Enacting policy changes by manipulating default options carries no more risk than ignoring such options that were previously set passively, and it offers far greater opportunities for benefit."

Read the article:

Harnessing the power of default options to improve health care.
Halpern SD, Ubel PA, Asch DA. New England Journal of Medicine 2007;357:1340-1344.

CBSSM Seminar: Paul A. Lombardo, PhD, JD

Thu, September 22, 2016, 3:00pm to 4:00pm
Location: 
NCRC Building 16, Conference Rm 266C

Paul A. Lombardo, PhD, JD
Regents' Professor and Bobby Lee Cook Professor of Law
Georgia State University College of Law

"From Psycographs to FMRI: Historical Context for the Claims of Neuroscience"

Abstract: In the U.S., announcement of the Presidential “Brain Initiative” has focused attention on “revolutionizing our understanding of the human brain” And neuroscience has begun to replace genetics as the field most likely to fill press headlines. The promise of more research funding for the field has led to extraordinary claims that research will soon lead to mind reading, lie detection, and unlocking the brain-based foundations of virtue and character. But these claims echo similar assertions from a century ago, many of which were eventually discarded as quackery, eugenics or misguided pseudoscience. Then the power of phrenology was touted, and machines like the “Psycograph” were offered to “thoroughly and accurately” measure “the  powers of intellect, affect and will.” Today similarly expansive claims are being made for color-coded functional magnetic resonance imagery. Are we facing true scientific triumph or mere recycled hyperbole? This presentation will explore the historical echoes of today’s most extravagant claims in the field of neuroscience, and analyze how our actual understanding of mental functioning compares to the hopeful assertions that are filling both the lay press and scientific journals.

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.

A New Drug for the New Year (Jan-04)

Out with the old drugs and in with the new! How is your doctor prescribing for you?

Imagine that you are a physician and your patient is a 55-year-old white male with high blood pressure. He has no other medical problems, is on no medications, and has completed a 1-year program of diet and exercise to control his condition, but his blood pressure remains elevated at 170/105 (140/90 is the definition of high blood pressure).

As his physician, you have to decide on a medication to prescribe him in order to lower his blood pressure. You have the following options to choose from:

Diuretics: Diuretics are medications that lower blood pressure by getting rid of excess fluid in your body, making it easier for your heart to pump. They were first introduced in the 1950s.

Beta-blockers: Beta-blockers are medications that lower blood pressure by helping the heart to relax and pump more effectively, and by also reducing heart rate. They were first introduced in the 1960s.

ACE inhibitors: Angiotensin converting enzyme (ACE) inhibitors are medications that lower blood pressure by widening blood vessels and increasing blood flow. They were first introduced in 1981.

Calcium channel blockers: Calcium channel blockers are medications that lower blood pressure by relaxing blood vessels, reducing the heart's workload, and increasing the amount of blood and oxygen that reach the heart. They were also first introduced in 1981.
 
What type of medication would you prescribe this patient?
 
  • A diuretic
  • A beta-blocker
  • An ACE inhibitor
  • A calcium channel blocker

How do you compare to the physicians surveyed?

Of the physicians surveyed, 18% chose the same medication as you did. 38% chose an ACE inhibitor, 29% chose a beta-blocker, and 11% chose a calcium channel blocker. Most physicians chose an ACE inhibitor, a newer type of medication, rather than beta-blockers or diuretics, which are older types of medication.

Why is this important? When asked how they made their decision, the majority of physicians believed that diuretics were less effective and that beta-blockers were less likely to be tolerated by a patient's body than the other medications. However, a number of important studies have shown that beta-blockers and diuretics are as effective at lowering blood pressure as newer medications like ACE inhibitors and calcium channel blockers. Studies have also shown that beta-blockers and diuretics are equally or even better tolerated than the newer types of medications. Yet, the use of beta-blockers and diuretics has declined steadily in the past 15 years in favor of the newer and more expensive types of medications.

Why do physicians believe these things when the studies say otherwise?

The answer to this question is not fully known. One possibility is that physicians may be prescribing newer medications because these are the medications actively promoted by pharmaceutical companies. By providing free samples of the newer medications for physicians to give to patients, these companies may be influencing which medications physicians actually decide to prescribe. To test this possibility, after physicians had decided between diuretics, beta-blockers, ACE inhibitors, and calcium channel blockers, they were asked if they ever provide their patients with free medication samples from these companies to treat their high blood pressure. It was found that physicians who used free samples were more likely to believe that ACE inhibitors are more effective. This isn't proof that physicians are influenced by pharmaceutical companies when prescribing medication for high blood pressure, but it does urge us to seriously consider if physicians may need to be re-educated about the effectiveness and tolerability of beta-blockers and diuretics.

For more information see:

Ubel, PA, Jepson, C, Asch, DA. Misperceptions about beta-blockers and diuretics. Journal of General Internal Medicine, 18, 977-983. 2003.

 

Give or take a few years (Feb-05)

A longer life may result from the amount of social support present in your life, but is the longevity due to giving or receiving that support?

Imagine that in your busy schedule each week, you typically at least have Wednesday and Saturday nights free as time to spend however you want. Recently, however, one of your close friends had her car break down and now she is wondering whether you would be willing to drive her to and from a yoga class on Wednesday nights for the next three weeks while the car is in the shop. She told you that the class is only about a 15 minute drive each way. She said that you shouldn't feel pressured, and she just thought she'd ask if you had the time to help her out.

Would you be willing to drive your friend to and from her yoga class for the next three weeks?
  • Yes, I'd take the time to help her out.
  • No, I'd keep my Wednesday nights free.
Do you think that helping out others could at all affect your health?
  • Yes
  • No

Giving vs. receiving: effects on mortality

A research team of investigators at the U of M Institute for Social Research teamed up with CBDSM investigator, Dylan Smith, to conduct a study investigating whether giving or receiving help affects longevity. The researchers noted that receiving social support is likely to be correlated with other aspects of close relationships, including the extent to which individuals give to one another. Based on this, they hypothesized that some of the benefits of social contact, sometimes attributed to receiving support from others, may instead be due to the act of giving support to others.

Using a sample of 423 married couples from the Detroit area, the investigators conducted face-to-face interviews over an 11-month period. The interviews assessed the amount of instrumental support respondents had given to and received from neighbors, friends, and relatives, as well as the amount of emotional support they had given to and received from their spouse. Instrumental support included things like helping with transportation, errands, and child care, whereas emotional support involved having open discussions with a spouse and feeling emotionally supported. Mortality was monitored over a 5-year period by checking daily obituaries and monthly death record tapes provided by the State of Michigan. To control for the possibility that any beneficial effects of giving support are due to a type of mental or physical robustness that underlies both giving and mortality risk, the investigators also measured a variety of demographic, health, and individual difference variables, including social contact and dependence on the spouse.

The investigators found that those who reported giving support to others had a reduced risk of mortality. This was true for both instrumental supoprt given to neighbors, friends, and relatives, and for emotional support given to a spouse. They also found that the relationship between receiving social support and mortality depended on other factors. Specifically, receiving emotional support appeared to reduce the risk of mortality when dependence on spouse, but not giving emotional support, was controlled. Receiving instrumental support from others actually increased the risk of mortality when giving support, but not dependence on spouse, was controlled.

What can we make of these findings?

It appears from these results that the benefits of social contact are mostly associated with giving rather than receiving. Measures that assess receiving alone may be imprecise, producing different results as a function of dependence and giving support.

Given the correlational nature of this study, it is not possible to determine conclusively that giving support accounts for the social benefit traditionally associated with receiving support. Nevertheless, the results of the present study should be considered a strong argument for the inclusion of measures of giving support in future studies of social support, and perhaps more importantly, researchers should be cautious of assuming that the benefits of social contact reside in receiving support.

It's true that when helping others out, you might have to give up some of your own time, but based on the above findings, it looks like in the long run you may end up ultimately gaining more time.

Read the article:

Providing social support may be more beneficial than receiving it: results from a prospective study of mortality.
Brown S, Nesse RM, Vinokur AD, Smith DM. Psychological Science 2003;14:320-327.

Masahito Jimbo, MD, PhD, MPH

Faculty

Masahito Jimbo is Professor of Family Medicine and Urology at the University of Michigan. Having worked as a family physician in both urban (Philadelphia) and rural (North Carolina) underserved areas, he has first-hand knowledge and experience of the challenges faced by clinicians and healthcare institutions to be successful in providing patient care that is personal, comprehensive, efficient and timely. Initially trained in basic laboratory research, having obtained his MD and PhD degrees at Keio University in Tokyo, Japan, Dr.

Last Name: 
Jimbo

Lesly Dossett, MD, MPH

Faculty

Dr. Lesly Dossett MD, MPH is Assistant Professor of Surgery in the Division of Surgical Oncology at the University of Michigan. Dr. Dossett is an Honors Program and Summa Cum Laude graduate of Western Kentucky University. She earned her medical degree at Vanderbilt University School of Medicine in 2003, attending on a United States Navy Health Professions Scholarship. She completed general surgery residency at Vanderbilt University Medical Center in 2010, where she served as Administrative Chief Resident.

Last Name: 
Dossett

Supporting information for: 2015 CBSSM Research Colloquium and Bishop Lecture (Lawrence O. Gostin, J.D., LL.D Hon.)

Natalie Bartnik, MPH, Research Associate, HBHE Genetics Research Group, UM School of Public Health: "Why, how and when oncologists disclose genome sequencing results in clinical practice"

Abstract: Integrating an individual’s clinical history with genome sequencing data can inform diagnostic and treatment strategies tailored to the patient’s mutational landscape. In oncology, precision medicine offers the additional opportunity to characterize novel gene targets for patients with cancer who lack known or viable targets. It is not known whether oncologists communicate sequencing results to patients, or how and why oncologists integrate sequencing profiles into clinical practice. In a survey of 43 oncologists who referred 111 patients to the MIONCOSEQ Study, we found that nearly a quarter of oncologists planned to make changes to their patient’s treatment based on genomic findings. Prominent barriers to the integration of sequencing results into clinical practice were a lack of findings with perceived clinical significance, as well as limitations in locally available clinical trials. The majority of physicians planned to communicate sequencing results to their patients, mostly via in-person clinic visits.


Michele Gornick, PhD, MICHR PTSP Postdoctoral Fellow, VA HSRD Fellow & CBSSM Research Investigator: "Information and deliberation make a difference: The public’s preferences for the return of secondary genomic findings"

Abstract: As genome sequencing becomes a part of clinical practice, how best to disclose sequencing results –including secondary findings-- raises significant issues. Expert consensus panels have been convened to provide recommendations, but what do members of the public want? 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. A significant shift in participants’ perspectives on the disclosure of adult onset conditions from the baseline survey, that remained stable after a month follow-up (response rate = 87%; Χ2(1, N=60) = 4.26, p =0.039), suggests the value of education and deliberation for the appreciation of the scientific and ethical complexities of genome sequencing.


Aaron Scherer, PhD, CBSSM Postdoctoral Fellow: "Elephants, Donkeys, and Medicine: Political Differences in Health Risk Perceptions and Adherence to Medical Recommendations"

The relationship between political ideology and health is often relegated to discussions of health care policy. But what if political ideology affects much more than health care policy preferences? I will discuss two studies that provide some initial evidence that political ideology influences our perceptions of health risks and adherence to medical recommendations. In one study examining risk communication strategies, political ideology was related to differences in perceptions of Ebola and influenza risk, as well as willingness to vaccinate against these two infectious diseases. In a second study examining beliefs in medical conspiracies, political ideology was related to differences in self-reported adherence to doctor’s recommendations and prescription use. The psychological differences between conservatives and liberals that may help illuminate why these differences exist will be discussed.

Stephanie Kukora, MD and Nathan Gollehon, MD, Fellows, Division of Neonatal-Perinatal Medicine, Department of Pediatrics, UM Mott Children’s Hospital: "Epidemiology of outpatient prenatal consultation: implications for decision-making and perinatal outcomes"

Abstract: Neonatologists provide anticipatory guidance and support decision-making for complicated pregnancies, in which poor/ambiguous prognostication can lead to over-/under-treatment.  Referral to antenatal palliative care consultation (PCC) is not standard; little is known about the basis for referral, and their role in perinatal decision-making.

117 women had outpatient neonatology consultation, with decision-making for 146 fetuses with multiple anomalies/genetic, single major anomaly, or obstetric complications. 18(12%) were given a prognosis of uniform non-survival and 41(28%) had anticipated survival with intervention. Remaining fetuses were given unknown prognoses 87(60%), some qualified “likely survivable” 17(12%) or “likely poor” 33(23%). Most prognoses aligned with outcomes, though outcomes were better than predicted in 3(2%) infants and worse in 10(7%).  Mismatches between prognosis and decision occurred in 10(7%) infants who were provided resuscitation despite “non-survival” or “likely poor” prognoses.

23 (19.7%) of the 117 mother/fetus pairs received antenatal PCC.  Prognoses included: 11(48%) non-survivable, 11(48%) unknown but likely poor, 1(4%) survivable with surgical intervention. Fetal/neonatal outcome included: fetal demise 5(22%), in-hospital death 16(70%), survival to discharge 2(9%). 22 maternal/fetal pairs with 3(13%) non-survivable and 19(86%) likely poor prognoses were not referred, but had similar outcomes: fetal demise 4(18%), in-hospital death 15(68%), survival to discharge 3(14%). Those with PCC were more likely to choose comfort-care than those without (61% vs. 18%, p < 0.01). Of non-survivors, 94% with PCC died within 4 days while 27% without PCC received >14 days of intensive care.

We identified relatively few cases of mismatch between prognosis and outcome; however, rare cases of prognostic failure warrant caution. Although allowing parents to pursue aggressive neonatal care respects autonomy, it may delay rather than prevent death. Long-term outcomes with and without PCC were similar for infants with poor prognoses, though non-survivors with PCC were more likely to have a comfort care plan and shorter time to in-hospital death.


Minnie Bluhm, PhD, MPH, Assistant Professor, School of Health Sciences, Eastern Michigan University: "Oncologists' decisions about administering late chemotherapy: What makes it so difficult?"

Abstract: Background. An estimated 20-50% of incurable cancer patients receive chemotherapy in the last 30 days of life, although little data support this practice.  Continued use of chemotherapy typically precludes hospice enrollment.  It may also result in more symptoms, increased use of aggressive treatments, and worsening quality of life.  Despite this, few studies have explored oncologists' rationales for administering chemotherapy during the last weeks of life.  The purpose of this study is to examine factors that oncologists report influence their decisions about late chemotherapy.

Methods. In-depth individual interviews were conducted with 17 oncologists using a semi-structured interview guide.  Interviews were audio-recorded and transcribed verbatim.  Transcripts were coded and content analyzed for themes and patterns.

Results.  Three key findings emerged.  1) Clinical factors drive oncologists’ late chemotherapy decisions when they point to clear treatment choices, along with patient preferences.  When clinical factors are ambiguous, non-clinical factors become more salient.  2) Late chemotherapy is patient-driven.  It is used to palliate physical and emotional symptoms and maintain patient hope, even when physical benefit is not expected.  3) Caring for dying patients is difficult and impacts oncologists and their treatment decisions.  Difficulties also cited as influences favoring treatment include: emotional exhaustion, difficulty communicating about stopping or not starting chemotherapy, overwhelming sense of responsibility for life and death, feeling badly about the limits of oncology to heal, and prognostic uncertainty.

Conclusions.  Findings reveal a nuanced understanding of why it can be so difficult for oncologists to refuse chemotherapy to patients near death.  Doing so adds to the existing burden of caring for dying patients.  Therefore, at times, oncologists prescribe chemotherapy to simply help everyone feel better, regardless of expected clinical benefits or costs.  Future work is needed on the impact of caring for dying patients on oncologists and on supportive interventions that promote optimal treatment decisions.

Danielle Czarnecki, PhD Candidate, UM Department of Sociology: "Moral Women, Immoral Technologies: How Devout Women Negotiate Maternal Desires, Religion, and Assisted Reproductive Technologies"

Abstract: Catholicism is the most restrictive world religion in its position on assisted reproductive technologies (ARTs). The opposition of the Church, combined with the widespread acceptability of ARTs in the U.S., creates a potentially profound moral dilemma for those who adhere to Church doctrine. Drawing on interviews from 33 Catholic women, this study shows that devout women have different understandings of these technologies than non or less religious women. These differences are rooted in devout women’s position of navigating two contradictory cultural schemas (Sewell 1992) —“religious” and “secular”—regarding the meaning of reproductive technologies in the contemporary U.S. Religious schemas provide devout women with different cultural resources that allow them to develop strategies to avoid the use of ARTs. Yet they must still reckon with the ideal of biological parenthood. I show how devout women draw on religious doctrine to find value and meaning in their suffering , to move beyond biological motherhood,  and to ultimately achieve a moral femininity. While religion increases the burden of reproduction for devout women, it also provides the cultural resources to resist the financial, emotional, and physical difficulties experienced by women who use ARTs.


Uchenna Ezeibe, MD, Resident Physician, UMHS Department of Pediatrics & Communicable Diseases: "Pediatric Ethics Consultation Service at a Tertiary Hospital: A Retrospective Review"

Abstract: Background: Published data about hospital ethics consultation services focus primarily on adult patients. There is little information on pediatric ethics consultations – specifically whether patient demographics were related to type and prevalence of consults.

Objective: To review recent ethics consults at a large children’s hospital and explore associations with patient demographics.

Design/Methods: We reviewed ethics consults between 7/1/2009 – 12/31/2013 at a Midwest children’s hospital. We used Armstrong Clinical Ethics Coding System 2013©, modified for pediatrics, to code consults. We collected data on patient race, age, and insurance status (private vs. public) as a proxy for socioeconomic status. We used Microsoft Excel 2013© to generate descriptive statistics.

Results:, approximately 321,713 inpatient visits, and 29 ethics consults were reviewed. Most consults (72.5%) concerned inpatients. Of these, 82% originated from 1 of 3 ICUs (neonatal, pediatric, and pediatric-cardiothoracic). The most common reasons for consultation were: 1) treatment-based decision-making (31%),); 2) end-of-life decisions (28%); & 3) substitute decision-making (24%).  The mean patient age for treatment-based and substitute decision-making consults were similar at 6.8 and 7.9 years, respectively.  Younger patients (mean age: 2.4 years) were involved in end-of-life dilemmas. Patients receiving consults differed from the general patient population in that fewer patients with consults were White (52% vs. 71%) and more were  African-American (34.5% vs 9%).  Approximately 76% of patients with ethics consults had public insurance compared to approximately 29% amongst all inpatient admissions.

Conclusion:  In this single-center retrospective review, we found that African-Americans and patients with public insurance were over-represented in receipt of ethics consultations compared to the general patient population. We also found that dilemmas about end-of-life decisions were more common for younger children. Given our small numbers, strong conclusions cannot be drawn from this data. Nevertheless, our findings do point to areas where communication between family and medical team can be improved.
 

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

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

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

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

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

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

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

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

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

 

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

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

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

Segregation Unit, 30 min., 2000

Carol Jacobsen, Director

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

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

 

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

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

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

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

Michele Gornick is a Postdoctoral Research Fellow at the VA Center for Clinical Management Research and the Center for Bioethics and Social Sciences in Medicine at the University of Michigan.  She received her PhD in Human Genetics and MA in Statistics from the University of Michigan.  Her research is in translational medicine, specifically dealing with ethical issues surrounding the communication of genomic information to cancer patients, physicians and other health care providers.

 

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

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

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

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

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

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

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

 

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

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

Co-author: Meta Kreiner, MSc

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

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

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

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

 

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

Pages