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Emergent Research Series: The Google of Healthcare w/Kayte Spector-Bagdady

Wed, March 14, 2018, 2:00pm to 3:30pm
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Location: 
Hatcher Graduate Library Gallery (913 S. University Avenue)

The Google of Healthcare: Making Big Data Work for—As Opposed to Against—Our Patients’ Best Interest

Our data are collected at every turn: where we drive, who we email, what we google, what we buy. Perhaps a last bastion of expected privacy protections surrounds our health data—but while some systems (like healthcare providers) have stringent governance, others (like wellness apps) do not. Ready access and linkage of medical information can help us provide better care to our patients, but it can also serve to harm, alienate, and erode trust. This talk will explore how health data are currently being collected and by who, as well as ways we can both serve and protect our patients in the future.

Kayte Spector-Bagdady, JD, MBE, is an Assistant Professor in the Department of Obstetrics and Gynecology at the University of Michigan Medical School and the Service Chief of the Research Ethics Service in the Center for Bioethics and Social Sciences in Medicine (CBSSM). She is a former drug and device attorney and Associate Director of President Obama’s Presidential Commission for the study of Bioethical Issues.

H. Myra Kim, ScD

Faculty

H. Myra Kim is a Research Scientist at the Center for Statistical Consultation and Research and and Adjunct Professor at the Department of Biostatistics. She received her Sc.D. in Biostatistics from Harvard University in 1995 and worked at Brown University as an Assistant Professor from 1995 to 1997. She has worked at UM since 1997 and has collaborated with various researchers from around the UM community as well as from other universities.

Research Interests: 
Last Name: 
Kim

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.

Adult Ethics Committee

The Michigan Medicine Committee advisory groups are appointed by the Hospital's Office of Clinical Affairs. They review ethical or moral questions that may come up during an adult patient's care. The consultants facilitate communication among adult patients, their families and the treatment team to assist everyone in making appropriate choices when difficult decisions need to be made. The Committee's goal is to help everyone decide the right thing to do. The Michigan Medicine Adult Ethics Committee is a sub-committee of the Executive Committee on Clinical Affairs as determined by the Medical Staff Bylaws.

About Us

Sometimes patients, families and staff have very difficult choices and ethical questions they need to talk about. Discussions with the Ethics Committee can be helpful and reassuring when a difficult choice must be made (for example, questions on end-of-life care, or issues of confidentiality). The goal of the Committee is to facilitate communication among adult patients, their families and the treatment team to assist everyone in making appropriate choices, as well as to assist Michigan Medicine in complying with ethical regulatory standards, when difficult decisions need to be made. The Committee provides consultation to the treatment team, patients and families on ethical, moral or philosophical problems and issues encountered in the course of managing inpatient and outpatient care.

Committee members include physicians, residents, nurses and social workers, as well as medical students, an attorney/compliance officer, a chaplain, a medical ethics professor and members from the community.

The Adult Ethics Committee meets on the third Tuesday of the month, form 12-1:30pm, at University Hospital in dining room D, if you would like to attend as a guest, please contact Amy Lynn @ lynnam@med.umich.edu

What happens when a meeting with the Ethics Committee is requested?

The consultants on call review the patient's medical situation and treatment options. In addition, concerns and feelings of the patient, family members, and the health care team are discussed. Members of the committee may visit with patients, families and medical personnel to discuss these concerns.

Ethics Committee members discuss the information which has been gathered. The Ethics Committee makes suggestions about the best course of action. Often there are a number of options available in the course of a patient's care. Final decisions are made by the patient, family and the health care team.

Request a Consult

Monday-Friday
8:00 a.m. - 5:00 p.m. Call 734-615-1379
After normal business hours, please call 936-6267 and ask for the clinical ethicist on call to be paged.

Resources

Financial Assistance

Non-Beneficial Treatment

Advance Directives

Committee Bylaws

 

For upcoming Bioethics Grand Rounds see Events

Pediatric Ethics Committee

The Michigan Medicine Committee advisory groups are appointed by the Hospital's Office of Clinical Affairs. They review ethical or moral questions that may come up during a pediatrics patient's care. The consultants facilitate communication among patients, their families and the treatment team to assist everyone in making appropriate choices when difficult decisions need to be made. The Committee's goal is to help everyone decide the right thing to do. The Michigan Medicine Ethics Committee is a sub-committee of the Executive Committee on Clinical Affairs as determined by the Medical Staff Bylaws. 

About Us


The committee is available for consultation to family members, patients, staff, and health care providers. The committee may help you and your child’s medical team clarify facts, examine ethical issues, and assist in the resolution of disagreements about your child’s care. The committee includes people with additional training in medical ethics, doctors, nurses, social workers, a lawyer, a chaplain, an administrator, and members of the community
The University of Michigan has a Pediatric Ethics Committee because the best medical care requires not only medical skill but good moral judgment. The Committee’s main purpose is to offer help and guidance on moral and ethical questions, such as:

  • Should treatment be started or stopped?
  • How much should a child be told about his or her disease?
  • Is the promise of treatment worth the suffering it may cause?
  • What is the best thing to do when we must face the end of life?
  • What happens when a meeting with the Ethics Committee is requested?

The consultants on call review the patient's medical situation and treatment options. In addition, concerns and feelings of the patient, family members, and the health care team are discussed. Members of the committee may visit with patients, families and medical personnel to discuss these concerns.

Ethics Committee members discuss the information which has been gathered. The Ethics Committee makes suggestions about the best course of action. Often there are a number of options available in the course of a patient's care. Final decisions are made by the patient, family and the health care team.

The Pediatric Ethics Committee meets on the first Tuesday of the month from 12-1:30pm at University Hospital in dining rooms C&D. If you would like to attend as a guest, please contact Amy Lynn @ lynnam@med.umich.edu

Request a Consult

Monday-Friday
8:00 a.m. - 5:00 p.m. Call 734-615-1379
After normal business hours, please call 936-6267 and ask for the clinical ethicist on call to be paged.

Resources

Financial Assistance

Non-Beneficial Treatment

Committee Bylaws

 

For upcoming Bioethics Grand Rounds see Events

 

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.

Susan Goold, MD, MHSA, MA

Faculty

Susan Dorr Goold, M.D., M.H.S.A., M.A., studies the allocation of scarce healthcare resources, especially the perspectives of patients and the public. Results from projects using the CHAT (Choosing Healthplans All Together) allocation game have been published and presented in national and international venues. CHAT won the 2003 Paul Ellwood Award and Dr. Goold is listed in the Foundation for Accountability's database of Innovators and Visionaries. Dr.

Last Name: 
Goold

Supporting information for: 2017 CBSSM Research Colloquium and Bishop Lecture (Norman Daniels, PhD)


"Setting priorities for Medicaid: The views of minority and underserved communities"
Presenter: Susan Goold, MD, MHSA, MA


Co-authors: Lisa Szymecko, JD, PhD; H. Myra Kim, ScD; Cengiz Salman, MA; A. Mark Fendrick, MD; Edith Kieffer, MPH, PhD; Marion Danis, MD, Zachary Rowe, BBA


Setting priorities for state Medicaid programs challenges policy makers. Engaging beneficiaries affected by tradeoffs could make allocations more just and more sensitive to their needs. 

Academic-community partnerships adapted the simulation exercise CHAT (CHoosing All Together) to engage community members in deliberations about Medicaid spending priorities.  After an informational video about Medicaid, individuals and deliberating groups choose from a menu of spending options constrained by limited resources. We randomly assigned participants from low-income communities throughout Michigan to participate in CHAT with (n=209) or without group deliberations (n=181) in English, Spanish or Arabic. Data collection included pre- and post-CHAT individual priorities and group priorities.

Low-income participants ranged from 18 to 81 years old (Mean 48.3); 61.6% were women. Over half (56.7%) self-identified as white, 30.8% African-American, 17.3% Hispanic, 9.2% Native American, and 12.1% Arab, Arab-American or Chaldean. Most (65.9%) had a chronic condition and 30.3% reported poor or fair health.

Before CHAT, most participants prioritized eligibility consistent with Medicaid expansion. They also prioritized coverage for a broad range of services. Most accepted daily copays for elective hospitalization (71.6% deliberators, 67.9% controls) and restricted access to specialists (60.2% deliberators, 57.4% controls). Deliberators were more likely than controls to increase, after deliberations, what they allocated to mental health care (between arm difference in allocation=0.22, p=.03) and eligibility (between arm difference in allocation=0.18, p=.04). Deliberating groups also prioritized eligibility; only 3 of 22 chose pre-expansion eligibility criteria, and 9 of 22 chose to expand eligibility further.

Members of underserved communities in Michigan put a high priority on Medicaid expansion and broad coverage. When given the opportunity to deliberate about priorities,  participants increased the priority given to expanded eligibility and coverage for mental health services.


"How Acceptable Is Paternalism? A Survey-Based Study of Clinician and Non-clinician Opinions on Decision Making After Life Threatening Stroke"
Presenter: Kunal Bailoor, MD Candidate


Co-authors: Chithra Perumalswami, MD, MSc; Andrew Shuman, MD; Raymond De Vries, PhD; Darin Zahuranec, MD, MS


Complex medical scenarios may benefit from a more paternalistic model of decision making. Yet, clinicians are taught to value patient autonomy, especially at the end-of-life. Little empirical data exist exploring opinions on paternalism.

Methods: A vignette-based survey exploring surrogate decision making after hemorrhagic stroke was administered to clinicians (faculty, residents, and nurses) at an academic health center, and non-clinicians recruited through a university research volunteer website. The cases involved an urgent decision about brain surgery, and a non-urgent decision about continuation of life support one week after stroke. Respondents rated the acceptability of paternalistic decision making, including clinicians not offering or making an explicit recommendation against the treatment, on a 4 point Likert scale.

Results: Of 924 eligible individuals, 818 (649 non-clinicians, 169 clinicians) completed the survey (completion rate 89%).  A minority of respondents (15.3%) found it acceptable not to offer surgery. Most believed it was acceptable to make an explicit recommendation that would likely result in death (73% for avoiding surgery, 69% for stopping the ventilator). Clinicians were more likely than non-clinicians to consider not offering surgery acceptable (30% vs 11%, p<0.0001). Clinicians were more likely to consider recommendations against surgery acceptable (82% vs 71%, p=0.003) and to consider recommendations to discontinue the ventilator acceptable (77% vs 67%, p=0.02). There were no differences between the nurse and physician acceptability ratings (p=0.92).

Conclusions: Clinicians and the lay public differ on the acceptability of paternalistic decision making. Understanding these differences are vital to improving communication between clinicians, patients, and families.


"Ethical Challenges Faced by Providers in Pediatric Death: A Qualitative Thematic Analysis"
Presenter: Stephanie Kukora, MD


Co-authors: Janice Firn, PhD, MSW; Patricia Keefer, MD; Naomi Laventhal, MD, MA
 

Background: Care providers of critically ill patients encounter ethically complex and morally distressing situations in practice. Though ethics committees guide ethical decision-making when conflicts arise in challenging cases, they rarely address routine needs of individual providers. Without ethics education, providers may lack skills necessary to resolve these conflicts or insight to recognize these dilemmas.

Objective: We sought to identify whether providers remark on ethical dilemmas/moral distress without being specifically prompted, when asked to comment on a recent in-hospital pediatric death. We also sought to characterize the nature of dilemmas or distress if found.

Methods: Providers involved in a deceased child’s care in the 24 hours prior to death were electronically surveyed. Questions included demographic information and free-text response. Free-text responses were thematically analyzed in Dedoose.

Results: There were 307 (35%) free-text responses in 879 completed surveys (33% total response rate), regarding the deaths of 138 patients (81% of in-hospital pediatric deaths) from November 2014 to May 2016. Multidisciplinary care team members from diverse hospital units were represented. 52 respondents described ethical challenges and/or moral distress. Disagreement/regret was a major theme, with subthemes of futility, suffering, and “wrong” medical choice made. Failure of shared decision-making was also a major theme, with subthemes of autonomy and best interest, false hope, denial, and misunderstanding/disagreement between the family and medical team. Some providers revealed personal ethical struggles pertaining to their role, including medication provision for pain at the end of life, struggling to be “truthful” while not divulging information inappropriate for their role, and determining when providing comfort care is ethically permissible.

Discussion/Conclusion: Providers experience ethical conflicts with pediatric end-of-life care but may be unwilling or unable to share them candidly. Education assisting staff in identifying and resolving these dilemmas may be helpful. Further support for providers to debrief safely, without criticism or repercussions, may be warranted.


"Capacity for Preferences:  An overlooked criterion for resolving ethical dilemmas with incapacitated patients"
Presenters: Jason Adam Wasserman, PhD; Mark Navin, PhD
 

Clinical bioethics traditionally recognizes a hierarchy of procedural standards for determining a patient’s best plan of care. In broad terms, priority is given first to autonomous patients themselves and then to surrogates who utilize substituted judgments to choose as they believe the patient would have chosen. In the absence of good information about what the patient would have wanted, clinical ethicists typically retreat to the “best interest” standard, which represents a relatively objective assessment designed to maximize benefits and/or minimize harms.  In this paper, we argue that “capacity for preferences” is a conceptually distinct and morally salient procedural standard for determining a patient’s best plan of care.  We build our argument on the grounds that 1) that many patients who lack decisional capacity can nevertheless reliably express preferences (an empirical claim); 2) these preferences are distinct from best interest and not reducible to best interest considerations; 3) that capacity for preferences, at a minimum, has moral valence for situations in which best interest is undetermined (and we argue this happens more frequently than commonly recognized); and, finally, 4) that capacity for preferences in incapacitated patients lacking reliable or valid surrogates might even subvert a best interest course of action in some cases.  Some precedent for our analysis can be found in the concept of pediatric assent. However, the idea that patient preferences matter morally has broad application for adult patients, including for those with advanced dementia and other mental illnesses that preclude capacity for decision-making.

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