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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.

J. Scott Roberts, PhD, received an R01 award from NHGRI for a multi-site, randomized controlled clinical trial to examine the impact and efficacy of a genetic risk assessment program that educates people with mild cognitive impairment about their chances of developing Alzheimer's disease.

The Center for Ethics and Humanities in the Life Sciences at Michigan State University has posted information about its 2011-12 Brown Bag/Webinar Series.  All sessions take place 12-1 pm in C-102 East Fee Hall on the East Lansing campus.  Sessions for the fall include:
September 7: Helen Veit, PhD, "The ethics of aging in an age of youth: Rising life expectancy in the early twentieth century United States"
October 19: Scott Kim, MD, PhD, "Democratic deliberation about surrogate consent for dementia research"
November 10: Stuart J. Youngner, MD, "Regulated euthanasia in the Netherlands: Is it working?"
December 7: Karen Meagher, PhD candidate, "Trustworthiness in public health practice"
See www.bioethics.msu.edu/ for more information.

CBSSM Seminar: Timothy R. B. Johnson, M.D.

Tue, October 03, 2017, 3:00pm
Location: 
NCRC, Building 10, G065

Timothy R. B. Johnson, M.D.
Arthur F. Thurnau Professor and Chair, Department of Obstetrics and Gynecology
Bates Professor of the Diseases of Women and Children
Professor of Obstetrics and Gynecology and Women’s Studies
Research Professor, CHGD

Title: Global Health Ethics and Reproductive Justice: Breadth and Depth in CBSSM

Global Health Ethics and Reproductive Justice (in this instance sexual rights and gender equity, specifically gender and sexual harassment/assault in Academic Medical Centers) appear to be areas where a number of CBSSM members have interest, expertise and are working inter-disciplinarily in domains that will differentiate CBSSM nationally and internationally. Could and should these develop into CBSSM thematic interests? Whatever the case, they will remain topics of significant interest across CBSSM and are worthy of broad discussion and  understanding.

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.

Brian Zikmund-Fisher, PhD, a CBSSM investigator and Director of the CBSSM Internet Survey lab, is the principal investigator on an Investigator Initiated Research award from the Foundation for Informed Medical Decision Making that began in October 2008.  The grant, entitled "Learning by Doing: Improving Risk Communication Through Active Processing of Interactive Pictographs," will fund the development and testing of of Flash-based interactive risk graphics that research participants or patients can use to visually demonstrate how likely they believe some event is to occur. Dr. Zikmund-Fisher hopes that people who create risk graphics themselves will have a better intuitive understanding of risk than people who just view static images. Co-investigators on the award include Angela Fagerlin, Peter A. Ubel, and Amanda Dillard.

How bad would it be? (May-05)

For certain diseases, receiving treatment can disrupt daily life considerably. How would this disruption affect your happiness?

Think about your average mood during a typical week. How would you rate your average mood?

  • very pleasant
  • slightly pleasant
  • neutral
  • slightly unpleasant
  • very unpleasant
Now imagine you have end-stage renal disease, a condition in which your kidneys fail to perform their normal function of cleaning and filtering the blood. Treatment consists of a procedure called hemodialysis, in which your blood is filtered through a machine. You require treatment three times per week for about three hours each time. Discomfort is minor, and you can read, write, talk, eat, sleep, or watch TV during the treatment. Your lifestyle includes most normal activities, including work, exercise, and leisure; however, you feel fatigued if you miss treatment for several days. Also, you must follow a strict diet that involves reducing salt intake, consuming relatively little meat, and drinking only small amounts of fluids. Imagine, you have been on hemodialysis for a year.
Now imagine your average mood during a typical week if you had end-stage renal disease as described above. If you had end-stage renal disease, how do you think you would rate your average mood?
  • very pleasant
  • slightly pleasant
  • neutral
  • slightly unpleasant
  • very unpleasant

How do your answers compare?

The discrepancy between Patients and Non-patients

Past research has shown that there are serious health conditions that do not seem to be as badly experienced by the people living with them as healthy people would expect. Although the existence of this discrepancy is well established at this point, its cause is not. One possibility is that patients are exaggerating their well-being. They may be focusing on periods of positive mood even though they actually experience lengthy periods of negative mood. On the other hand, patients might be as happy as they report and healthy people might very much be overestimating the negative impact of the illness. A related explanation comes from evidence that healthy people tend to underestimate their own past moods, recalling negative times more readily than positive times. This would then make them more likely to also understate the well-being of other people as well, and this could contribute to the discrepancy.

Which explanation is correct?

Jason Riis, a researcher at the University of Michigan, teamed up with investigators from CBDSM and the University of Pennsylvania to conduct a study with the goal of finding out which of the above explanations is accountable for the discrepancy. To accomplish this, they set out to measure mood in two ways. One way is to ask individuals to estimate their average mood. The other way is to measure mood on a momentary basis, asking individuals at frequent intervals to indicate their mood at the moment, and then taking the average of these responses. This latter way of assessing mood is less influenced by biased recall than just asking subjects to estimate overall mood.

The investigators recruited 49 end-stage renal patients receiving hemodialysis treatment three times per week and 49 healthy controls who were matched to the patients on age, race, sex, and education. Subjects were first given an entry interview during which they estimated their average mood. They were then asked to carry around Palm Pilots for a week that beeped at random intervals, prompting them to indicate their mood at the moment. After carrying the Palm Pilots around for a week, subjects completed an exit interview that asked them to recall their average mood in the last week and to again estimate their average mood in general. Healthy subjects also estimated what they thought their average mood would be if they were a hemodialysis patient.

The investigators found that patients' average momentary moods were no lower than their estimated average mood, thus finding no evidence that patients exaggerate their mood. In fact, they failed to find any evidence that patients experience lower moods than healthy controls. In appears, then, that hemodialysis patients do largely adapt to their condition. On the other hand, healthy controls did rate that their average mood would be lower if they were homodialysis patients. Thus, the previously observed tendency of healthy people to underestimate the reported quality of life of people with various health conditions does seem to be due, in large part, to their misperception of the extent to which people can adapt to such conditions. In this study, healthy people also underestimated their own average mood. This could also account for some of the discrepancy, but the effect was not very large.

Why this is important

Ignorance of adaptation can have negative consequences for decision making. It can cause individuals to opt for unnecessarily risky surgeries and policymakers to invest in programs that have a minimal impact on people's well-being. This is not to say that research and treatment of kidney disease should not continue to be priorities, but in making difficult policy decisions, consideration of the moods experienced by patients may influence priorities between serious conditions such as, for example, paraplegia and depression. The results of this study suggest that policy makers should proceed with caition because healthy people's apparent exaggeration of the influence of illness on mood can lead to incorrect perceptions of how illness will influence quality of life.

Read the article:

Ignorance of hedonic adaptation to hemo-dialysis: a study using ecological momentary assessment.
Riis J, Loewenstein G, Baron J, Jepson C, Fagerlin A, Ubel PA. Journal of Experimental Psychology: General 2005;134:3-9.

Supporting information for: 2016 CBSSM Research Colloquium and Bishop Lecture (William Dale, MD, PhD)

Katrina Hauschildt, MA, PhD Candidate, Department of Sociology: “Language and Communication as Professionalization Projects in Clinical Ethics Consultation”


Although sociologists have examined the field of bioethics broadly, less empiric research has explored the process of clinical ethics consultation (CEC) in practice. This paper seeks to describe how UMHS’ CEC service focuses on communication, language, and terminology in professionalizing their membership and broadening the scope of their services. The CEC service established a specific communication standard for its written recommendations that emphasizes specificity and clarity for patients and their families, other providers, and members of the ethics committee. By identifying and reinforcing the importance of language and word choice in their own recommendations, newer members of the CEC are “trained” in how to craft recommendations, develop a specific jargon, and establish communication standards that differ from those used in other aspects of medical practice and documentation. The CEC service is often involved in addressing a variety of communication issues that arise in patient care, and these problems are thusly considered within the professional scope of the CEC service. By establishing the CEC service as an appropriate resource for dealing with communication issues between patients and their care team, the CEC service expands the professional boundaries of their work beyond strictly ethical expertise. The implications of these processes for professionalization and communication may be applicable to CEC services more broadly.


Devan Stahl, PhD, Assistant Professor of Clinical Ethics, Center for Ethics and Humanities in the Life Sciences, MSU: "Is there a right not to know?"


There is a widespread presumption within medicine that terminally ill patients have a “right not to know” their prognosis. Guidelines for giving bad news (SPIKES; ABCDE) all require that the patient be asked first. There may be a dark side to this practice, however: terminally ill patients’ ignorance or denial of their prognosis too often lasts to the very end, one important factor discouraging timely referral and use of palliative and hospice care. Because of a possible link between a right not to know one’s prognosis and the aggressive treatment that patients with advanced illness too often receive at the end of life, the claim that there is a right not to know needs much more serious examination than it has received.

The authors argue that patients with advanced illness do not have a right not to know their prognosis. Withholding prognostic information in deference to a right not to know impedes patients’ capacity to make informed autonomous decisions about their treatment, encourages denial, and increases the likelihood of poor end of life care.

Chithra Perumalswami, MD MSc, Robert Wood Johnson Foundation/Veterans Affairs Clinical Scholar: "Insurance Status of Elderly Americans and Location of Death"


Context:  The decision to forego curative treatments (which includes the Medicare Skilled Nursing Facility Medicare benefit) is not financially neutral for terminally ill patients who do not have concurrent insurance (Medicaid or private insurance) in that they are subsequently asked to pay for room and board of the nursing home if they choose the Medicare hospice benefit.  The association between insurance status and location of death is currently unknown.  
Purpose: To determine whether the concurrent insurance status with Medicare (Medicaid vs. private insurance) of decedents is associated with location of death in a nationally representative survey of elderly Americans.
Methods: Longitudinal analysis of 7,979 decedents aged 50 years or older in the Health and Retirement Study from 2000-2010 (6 biennial waves). We examined associations between insurance status and location of death (home, hospital, nursing home, hospice) using multinomial logistic regression models and adjusting for demographic, socioeconomic, and clinical variables.
Results:  Decedents with dual eligible insurance before or at the time of death were significantly more likely to die in a nursing home than to die in a hospital (relative risk ratio (RRR) 2.6; 95% CI, 1.9-3.6, p<0.001). 
Those dying in a nursing home tended to be unpartnered (widowed, separated or divorced, never married), cognitively impaired or with dementia. Elderly Americans less likely to die in a nursing home were blacks and Hispanics, individuals with cancer, and those with the highest wealth.
Conclusions:  Dual eligible patients are substantially more likely to die in a nursing home than a hospital, and therefore may miss out on valuable services at the end of life, including hospice care. This study may have several implications for current proposed Medicare policy changes to allow patients access to both curative care and hospice care at the same time. 

Lauren B. Smith, MD, Associate Professor, Department of Pathology/Ginny Sheffield, UM Medical Student (M3): "Special treatment for the VIP patient:  Is it ethical?  Is it dangerous?"


The care of VIP patients is often prioritized at medical centers and this prioritization may lead to disparate access to care and patient safety issues. VIP patients may be donors, celebrities, or other physicians. Allowing VIP patients access to earlier care or “special treatment” not only raises social justice issues, but also has been shown to lead to medical error and suboptimal treatment. Ethical considerations will be discussed and recommendations will be presented.

Naomi Laventhal, MD, MA, Assistant Professor, Department of Pediatrics and Communicable Diseases: "Roman Charity Redux: The Moral Obligations of the Breastfeeding Physician"


Female physicians must often reconcile the seemingly contradictory goals of valuing the health and well-being of their patients above all else, and actively mothering young children. One of the fundamental ethical precepts in medicine is for the physician to put the best interests of her patient ahead of her own.  For example the Fellowship Pledge of the American College of Surgeons states, “I pledge . . . to place the welfare and the rights of my patient above all else.” The challenge of weighing the needs of one’s own children against those of a patient is painfully acute for the breastfeeding physician. Is it ethically permissible to leave a busy clinic - or a patient in the under anesthesia in the operating room - in order to express breastmilk? Pragmatic strategies, such as mandates for appropriate space and time to pump, offer modest gains. However, we will suggest the need to re-envision the concept of “patient-first”, which is a vestige of the patriarchal hegemony that gave rise to our modern medical ethos, whereby nursing mothers are highly disadvantaged and virtually unable to reach the highest moral ideals of the profession.  Is the “right” to breastfeed absolute, or if should it be superseded by the needs of the patient? We will explore whether this issue is deeply personal, to be reconciled by affected individuals, or warrants an “outside-in” approach in which  physicians and bioethicists collectively and more philosophically consider whether and how to support women who choose to work and breastfeed.

Archana Bharadwaj, Graduate Student, UM School of Public Health: "Patient understanding and satisfaction regarding the clinical use of whole genome sequencing: Findings from the MedSeq Project"


Background: The expanded use of Whole Genome Sequencing (WGS) has generated excitement due its potential to tailor medical treatment. However, clinical use of WGS poses challenges for informed consent and disclosure of results. Few empirical studies have examined patients’ understanding of and satisfaction with the clinical communication of WGS results.
Methods: The MedSeq Project is a randomized clinical trial examining the impacts of WGS in primary care and cardiology. We analyzed survey data from patients’ initial enrollment and at multiple time points following physician disclosure of results. Domains of interest included understanding of informed consent, subjective understanding, satisfaction with communication of results, and decisional regret.
Results: Survey responses were provided by 202 participants (mean age = 55 years; 51% male; 80% college graduates). At enrollment, participants understood the majority of key facts about the study (mean = 19.6 / 22 items answered correctly), although some incorrectly answered items addressing results to be returned (e.g., 18% believed they would receive their entire DNA sequence. Higher informed consent knowledge scores were associated with female gender and higher genomic knowledge, subjective numeracy, and education levels (all p < .05). After results disclosure, participants had low scores of decisional regret regarding study participation; they also reported high levels of satisfaction with their physicians’ disclosure of results (mean = 5.9 on a 6-point scale), although ~20% of participants reported receiving “too much” information. Satisfaction with communication did not vary by participants’ demographics or other characteristics (e.g. genomic knowledge).
Conclusions: This study suggests that the intervention was well understood by patients, with low levels of decisional regret and high satisfaction with communication. Future research will need to examine these issues in more diverse samples, where misconceptions about the clinical WGS and concerns about information overload may be magnified.

Kayte Spector-Bagdady, JD, MBioethics, CBSSM Postdoctoral Research Fellow: "Direct‐to‐Consumer Biobanking"


23andMe is back on the market as the first direct‐to‐consumer genetic testing company that “includes reports that meet Food and Drug Administration standards for being clinically and scientifically valid.” Its current product includes 36 health‐related carrier‐status reports and consumers’ raw genetic data. But while its front‐end product is selling individual genetic tests online, its back‐end business model is amassing one of the largest privately owned genetic databases in the world.
This article argues that as the Department of Health and Human Services revises its regulation of research with human subjects as well as its proposal to exempt autosomal recessive carrier screens from premarket authorization it should contemplate the intersection of these areas of rulemaking—and consider how enhancing the security of federally funded research but loosening private access to biospecimens will drive more research into the private sector and result in less, not more, protection for human subjects.

Panel Presentation (Susan Goold, MD, MHSA, MA & colleagues): "Community engagement in setting research priorities: Representation, Participation and Evaluation"


We describe a 5-year project that engaged minority and underserved communities throughout the state of Michigan in deliberations about health research priorities to increase community voice in how limited health research resources are allocated. DECIDERS (Deliberative Engagement of Communities in DEcisions about Research Spending) formed a state-wide Steering Committee (SC) to develop a version of the deliberative exercise CHAT for health research priorities, then convened 47 groups to evaluate the tool and describe community research priorities.
Facilitators: Susan Goold and Zachary Rowe, Co-Directors
Panelists: Karen Calhoun, Charo Ledon, Esther Onaga, Lisa Szymecko

Investigator(s)

Conference

Title of Talk/Poster

Ray De Vries

Lisa Harris

et al.

American Society for Bioethics & Humanities (ASBH)

Annual Meeting

 

“Mundane Reproductive Ethics: Beyond the Sensational Lie"

 

"Everyday Ethical Problems in Abortion, In Vitro Fertilization, Pregnancy Planning, and Birth"

 

Ray De Vries

Susan Goold

et al.

American Society for Bioethics & Humanities (ASBH)

Annual Meeting

 

“Learning about Learning from the Public: A Workshop about Methods of Public Engagement on Ethical Issues in Biomedical Research, Health, and Health Care"

 

Angela Fagerlin

et al.

Society for Medical Decision Making (SMDM) Annual Meeting

 

“Minority Cancer Survivors' Perceptions and Experience with Cancer Clinical Trials Participation"

Angela Fagerlin

Andrea Fuhrel-Forbis

Sarah Hawley

Holly Witteman

et al.

 

Society for Medical Decision Making (SMDM) Annual Meeting

“Preferences for Breast Cancer Chemoprevention"

Angela Fagerlin

Andrea Fuhrel-Forbis

Brian Zikmund-Fisher

et al.

Society for Medical Decision Making (SMDM) Annual Meeting

 

“Informed Decision Making About Breast Cancer Chemoprevention: RCT of an Online Decision Aid Intervention"

Angela Fagerlin

Valerie Kahn

et al.

Society for Medical Decision Making (SMDM) Annual Meeting

 

“Literacy and Numeracy in Veterans and Their Impact on Cancer Treatment Perceptions and Anxiety"

Angela Fagerlin

Laura Scherer

et al.

Society for Medical Decision Making (SMDM) Annual Meeting

 

“Anxiety as an Impetus for Action: On the Relative Influence of Breast Cancer Risk and Breast Cancer Anxiety on Chemoprevention Decisions"

Angela Fagerlin

Laura Scherer

et al.

Society for Medical Decision Making (SMDM) Annual Meeting

 

“Literacy and Irrational Decisions: Bias From Beliefs, Not From Comprehension"

Angela Fagerlin

Holly Witteman

Brian Zikmund-Fisher

et al.

Society for Medical Decision Making (SMDM) Annual Meeting

 

“Integers Are Better: Adding Decimals to Risk Estimates Makes Them Less Believable and Harder to Remember"

Andrea Fuhrel-Forbis

Holly Witteman

Brian Zikmund-Fisher

et al.

Society for Medical Decision Making (SMDM) Annual Meeting

 

“Avatars and Animation of Risk Graphics Help People Better Understand Their Risk of Cardiovascular Disease"

Holly Witteman

Brian Zikmund-Fisher

et al.

Society for Medical Decision Making (SMDM) Annual Meeting

 

 

“If I'm Not High Risk, Then That's Not My Risk: Tailoring Estimates for Low-risk Patients May Undermine Perceived Relevance"

 

Brian Zikmund-Fisher

et al.

Society for Medical Decision Making (SMDM) Annual Meeting

“The Effect of Narrative Content and Emotional Valence on Decision About Treatments for Early Stage Breast Cancer"

 

Are you a numbers person? (Oct-07)

Many types of medical decisions involve making sense of numbers such as test results, risk statistics, or prognosis estimates. But people vary in their ability and confidence with numbers. How would you rate your own "numeracy"?

 

Not good at all

 

 

 

 

 

Extremely good

How good are you at working with fractions?

1

2

3

4

5

6

How good are you at working with percentages?

1

2

3

4

5

6

How good are you at calculating a 15% tip?

1

2

3

4

5

6

How good are you at figuring out how much a shirt will cost if it is 25% off?

1

2

3

4

5

6

 

Not at all helpful

 

 

 

 

Extremely helpful

When reading the newspaper, how helpful do you find tables and graphs that are parts of a story?

1

2

3

4

5

6

 

Always prefer words

 

 

 

 

Always prefer numbers

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")?

1

2

3

4

5

6

 

Always prefer percentages

 

 

 

 

Always prefer words

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")

1

2

3

4

5

6

 

Never

 

 

 

 

Very often

How often do you find numerical information to be useful?

1

2

3

4

5

6

Why is it important for researchers to know how numerate you are?

When a doctor or health educator is trying to communicate complex statistical information to a patient, it's helpful to know how well the patient understands numbers. This is called numeracy-the ability to process basic probability and numerical concepts. People low in numeracy might want or need different types of explanations than people high in numeracy.

How is numeracy measured?

In the past, researchers have used surveys similar to math tests to evaluate the levels of numeracy of participants in research studies. These objective numeracy tests can be time-consuming to administer and are often seen by the participants as stressful and annoying. As an alternative, a CBDSM research team-including Angela Fagerlin, Brian Zikmund-Fisher, Dylan Smith, Aleksandra Jankovic, and Peter Ubel-recently designed and tested an eight-item self-assessment tool, called the Subjective Numeracy Scale (SNS), to measure numeracy. As you saw when you completed the tool, four of the questions on the SNS measure people's beliefs about their skill in performing various mathematical operations, and four measure people's preferences about the presentation of numerical information. When the CBDSM team tested the SNS, they found that it was moderately correlated with objective numeracy tests. In a variety of risk communication and preference elicitation tasks, the SNS also predicted people's behavior almost as well as an objective numeracy test did. The advantage of the SNS is that it is quick to administer and is less stressful to participants than objective tests. In addition, only the SNS is recommended for phone or Internet administration. The researchers also found that study participants who completed the SNS were much more likely to answer all the numeracy questions and were much more likely to say that they would be willing to participate in an additional research study.

Are their broader implications?

Research has shown that many Americans, including highly educated individuals, have low levels of numeracy. Low numeracy has significant implications for people's health care, especially when it comes to understanding the risks and benefits of treatments. Although we may not easily change people's numeric ability, it may be possible to create health education materials that help patients with low numeracy skills. Several CBDSM researchers are have been pursuing this subject.

Read the articles:

Measuring numeracy without a math test: development of the subjective numeracy scale (SNS).
Fagerlin A, Zikmund-Fisher BJ, Ubel PA, Jankovic A, Derry HA, Smith DM. Medical Decision Making 2007;27(5):672-680.

Validation of the subjective numeracy scale (SNS): Effects of low numeracy on comprehension of risk communications and utility elicitations.
Zikmund-Fisher BJ, Smith DM, Ubel PA, Fagerlin A. Medical Decision Making 2007;27(5):663-671.

Making numbers matter: Present and future research in risk communication.
Fagerlin A, Ubel PA, Smith DM, Zikmund-Fisher BJ. American Journal of Health Behavior 2007;31(Suppl. 1):S47-S56.

 

 

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