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A Matter of Perspective (Jul-07)

Are opinions on whether health care funding should be rationed dependent on an individual's perspective? Imagine that there are two regional health systems, each responsible for providing health care for one million people. The Director of each system has enough money to fund only one of two medical treatment programs. The health systems have the same limited budget and are the same in every way except for the treatment program that each Director decides to fund.

One Director decides to fund Program A, which will cure 100 people with moderate shortness of breath. People with this condition have shortness of breath when walking an average block with no hills.
The other Director decides to fund Program B, which will cure 100 people with severe shortness of breath. People with this condition have shortness of breath even when walking only short distances, such as from the bedroom to the bathroom.
Which Director made the better decision?
  • Director who funded Program A (moderate shortness of breath)
  • Director who funded Program B (severe shortness of breath)
  • Both choices were equally good
If you chose either the Program A Director or the Program B Director, how may how many people would have to be cured of other condition to make the two choices seem equally good to you? Reminder: Program A and Program B would both cure 100 people.
 
Next, please check your responses to these statements:
"The thought of only one group of people being able to get treatment while other people may not be able to get treatment makes me feel outraged."
  • strongly agree
  • agree
  • neutral
  • disagree
  • strongly disagree
"I believe that there are situations where health care has to be rationed because sometimes there are not enough financial resources (eg, money for health care programs)."
  • strongly agree
  • agree
  • neutral
  • disagree
  • strongly disagree

How do your answers compare?

Before we analyze your responses to the scenario, we'd like to offer some background information about this area of research.

In an environment of scarce health care resources, policy makers and leaders of health care organizations often must make difficult choices about funding treatment programs. Researchers find out how people value different health states by asking questions like the ones you've answered. This area of research is called "person tradeoff elicitation."

The problem is that many people refuse to give a comparison value, saying that both choices are equal ("equivalence refusal") or saying that millions of people would have to be cured of one condition to be equal to the other treatment choice ("off-scale refusal"). Sometimes these responses are appropriate, but many times these responses seem inappropriate. Furthermore, the frequency of these decision refusals depends on how the questions are asked.

What were the specific goals of this research study?

In an article published by Laura J. Damschroder, Todd R. Roberts, Brian J. Zikmund-Fisher, and Peter A. Ubel (Medical Decision Making, May/June 2007), the authors explored whether people would be more willing to make health care tradeoffs if they were somewhat removed from the decision making role. As part of their study, the researchers asked people to comment on choices made by others, in this case, the Directors of two identical regional health systems. For this study, the researchers anticipated that asking participants to judge someone else's decision would make it easier for the participants to compare the benefit of curing two conditions that have a clear difference in severity. The researchers thought that adopting a perspective of judging someone else's decision might lessen the participants' feeling about making "tragic choices" between groups of patients and hence result in fewer refusals to choose. The researchers also hypothesized that respondents taking a non-decision-maker perspective would be more detached and would feel less outraged about the idea of having to ration medical treatments. As we will explain below, the researchers were surprised to learn that their hypotheses were wrong!

What did this research study find?

Some people surveyed in this study were asked to decide for themselves which of two treatment programs for shortness of breath should be funded. Others, like you, were asked which health system Director made the better decision about treatment programs for shortness of breath. Significantly, the respondents who had the evaluator perspective had nearly two times higher odds of giving an equivalence refusal�that is, saying that the decisions were equal. Why did this evaluator perspective fail to decrease these decision refusals? One possibility is that respondents did not feel as engaged in the decision. It's also possible that respondents felt that they were judging the Directors who made the decision rather than the decision itself. Or maybe respondents didn't want to second-guess the decisions of people they perceived as experts. The researchers predicted that people who had to make the decision about treatment themselves would be more outraged about the idea of rationing health care treatments. This prediction was also wrong! 69% of all respondents agreed that rationing is sometimes necessary, and yet 66% of all respondents also felt outraged about the idea of having to ration. The percentages were nearly the same for those deciding directly and those evaluating the decision of Directors of health care systems.

What conclusions did the researchers draw?

The researchers in this study concluded that perspective definitely matters in making hard choices about allocation of health care resources. They attempted to increase people's willingness to make tradeoffs by changing their perspective from decision maker to evaluator of someone else's decision. These attempts backfired. Contrary to the researchers' predictions, people were dramatically more likely to give equivalence refusals when they were assigned to a non-decision-maker perspective. The researchers also concluded that the degree of emotion aroused by health care rationing also plays a role in people's willingness to make tradeoffs.

So, how does your response to the Directors' decision in the shortness-of-breath scenario compare with the responses of the people surveyed for this study?

If you responded that the choices of both Directors were equal, you were not alone! Overall, with this scenario and related ones, 32% of respondents in the published study refused to make the tradeoff. These were the equivalence refusals. In comparison, 21% of respondents in the study who were asked to decide themselves between two patient groups gave an equivalence refusal.

If you made a choice of Directors in the shortness-of-breath scenario, how does your numerical answer compare with the responses of people surveyed for this study?

In the study, 15% of respondents gave a number of one million or more as the point at which the Directors' decisions about the two treatment programs would be equal. These were the off-scale refusals. In comparison, 19% of respondents in the study who were asked to decide themselves about the two programs gave an off-scale refusal.

What about your level of outrage?

In the study, 69% of respondents agreed that rationing of health care treatment is sometimes necessary, but 66% also felt outraged about the idea of having to ration. These attitudes were the same whether the respondents were assigned an evaluator perspective (as you were) or a direct decision maker perspective.

Read the article:

Why people refuse to make tradeoffs in person tradeoff elicitations: A matter of perspective?
Damschroder LJ, Roberts TR, Zikmund-Fisher BJ, Ubel PA. Medical Decision Making 2007;27:266-288.

 

Funded by Foundation for Informed Medical Decision Making

Funding Years: 2007 -2008

 

The National Survey of Medical Decisions (the DECISIONS study), co-led by CBDSM investigators Mick Couper (PI) and Brian Zikmund-Fisher (co-I), is a unique effort to collect nationally representative data about when and how middle-aged and older adults manage the medical decisions they face.

The DECISIONS study consisted of a random digit dial telephone survey of 3,010 adults over the age of 40 in the United States conducted between November 2006 and May 2007.  Participants were asked a series of screening questions to identify which of 10 common medical decisions they may have discussed with their health care providers in the previous two years and then completed 2-3 question modules regarding specific decisions that were relevant to each individual. 

Its initial screening module gathered highly generalizeable data regarding the prevalence of different types of common medical decisions in the experience of older Americans.  Its dynamically-administered modules then requested detailed information regarding how and when patients discuss key medical decisions with their health care providers and whether variations in decision-making processes may have influenced patients’ medical care. 

Funded by the Foundation for Informed Medical Decision Making (FIMDM), the DECISIONS project has been a highly collaborative project that has included investigators from Institute for Social Research and FIMDM, as well as CBDSM. In addition, FIMDM-affiliated researchers from around the country are analyzing DECISIONS data to inform their research. While the initial papers from the DECISIONS dataset will be by core investigators, the study team intends to make the dataset publicly available for more widespread use sometime in 2009.

Mick Couper (PI)

Brian Zikmund-Fisher, PhD, is the featured guest editor for a special supplement to Medical Decision Making's September/October 2010 issue, highlighting the DECISIONS study, a nationwide survey of adults in the US regarding common medical decisions.  Lead author on the main paper of the supplement, Zikmund-Fisher and co-authors (including CBSSM faculty Angela Fagerlin, PhD and Mick Couper, PhD) describe the DECISIONS study, a telephone interview of a nationally representative sample of 3010 adults age 40 and over faced with making a medical decision in the past two years.  Researchers defined medical decisions as the patient having initiated medications, been screened, or had surgery within the past 2 years or having discussed these actions with a health care provider during the same interval.  Key findings from the study:

Although patients frequently receive information about the benefits of a procedure or medication, they don't always learn about the disadvantages.

Healthcare providers don't always ask patients what they want to do.

Most patients don't use the Internet to help them make common medical decisions; healthcare professionals remain the most important source of information.

Patients often don't know as much as they think they do.  Many patients feel well informed even when they don't know key facts that would help them make a better decision.

African-Americans and Hispanics were less knowledgeable than other patients about medications to treat high cholesterol.  In addition, they were more likely to say their doctor made decisions about cholesterol medications for them.

Most patients think they are more likely to get cancer than they really are, and tend to view cancer screenings as more accurate than they are.

Men and women think about cancer risks differently.  Women are more active participants in cancer screening decisions regardless of their perception of risk, whereas men tended to get involved only if they felt at higher risk.

Funded by: NIH

Funding Years: 2016-2020

In the past 30 years, the Incidence of thyroid cancer has tripled. The majority of the rise in thyroid cancer incidence is attributed to an increase in low-risk, well-differentiated thyroid cancer, a disease that has a 10-year mortality close to zero. Our previous work suggests that patients with low-risk thyroid cancer are at risk for overtreatment, defined as the use of Surgical and medical interventions in the absence of a clear survival benefit. The overtreatment of thyroid cancer has inherent costs, both to patient health and to society. The reason for the intensive management and potential overtreatment of low-risk thyroid cancer remains unclear. By using SEER-linked patient and physician Surveys, we plan to understand the Treatment decision making in low-risk thyroid cancer. We hypothesize that knowledge and attitudes influence decision making. Specifically, we anticipate that lack of knowledge of risks of death, recurrence and Treatment complications is associated with Treatment that is more intensive. in addition, we postulate that a general preference for active treatment will also be associated with more intensive cancer Treatment. Although both patient and physician perceptions of Treatment need (i.e., knowledge and attitudes) likely contribute to Treatment intensity, we anticipate that the primary driver will be physicians, even after controlling for their patients' perceptions. This study will serve as the foundation for future Intervention studies. By identifying the specific role of physician and patient knowledge and attitudes toward thyroid cancer Treatment, we will be able to create tailored educational interventions to personalize Surgical and medical care for thyroid cancer patients, thus minimizing overtreatment and its inherent risks and costs. As the rising Incidence, low mortality, and pattern of intensive Treatment make thyroid cancer arguably the best cancer model for overtreatment, this proposed study will also serve as a model to understand overtreatment in other malignancies.

PI: Megan Haymart

CO(s): Brian J. Zikmund-Fisher, PhD & Sarah Hawley, PhD. MPH

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: 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.

BROCHER RESIDENCIES 2016 -- CALL FOR PROPOSALS

The Brocher Foundation offers visiting researchers the opportunity to come at the Brocher Centre in a peaceful park on the shores of Lake Geneva, to write a book, articles, an essay or a PhD thesis. The visiting positions are an occasion to meet other researchers from different disciplines and countries as well as experts from numerous International Organizations & Non Governmental Organizations based in Geneva, such as WHO, WTO, WIPO, UNHCR, ILO, WMA, ICRC, and others. The Brocher Foundation residencies last between 1 and 4 months.

They give researchers (PhD students to Professors) the opportunity to work at the Brocher Centre on projects on the ethical, legal and social implications for humankind of recent medical research and new technologies. Researchers can also apply with one or two other researchers to work on a collaborative project.

CHECK CONDITIONS AND APPLY ON WWW.BROCHER.CH/CALLS

CBSSM Seminar: Jodyn Platt, MPH, PhD

Thu, October 08, 2015, 3:00pm to 4:00pm
Location: 
NCRC, Building 16, Room 266C

Jodyn Platt, MPH, PhD


Research Investigator
Department of Learning Health Sciences

Terms and Conditions for Trust in Learning Health Systems

The next generation of health information technology, organized as “learning health systems,” promises efficient, engineered solutions to the well-known and enduring maladies of the existing U.S. health infrastructure: escalating costs, poor health outcomes, ineffective use of technology, sluggish research pipelines, dangerous medical error rates, and failure to implement known clinical best practices. Learning health systems would capitalize on "big data" enterprises to accelerate the production and application of knowledge in health care. However, the sharing of health information required, both within and across institutions, greatly exceeds the public’s understanding.  These initiatives are riding a precarious edge as the gap between public expectations and the realities of institutional data sharing widens at an unprecedented rate.  This presentation considers the causes and consequences of trust and mistrust of health information systems, their data sharing practices, and their policy implications. 
 

 

Bioethics Grand Rounds - Dr. Michael Jibson

Wed, August 26, 2015, 12:00pm
Location: 
Ford Auditorium

This month's grand rounds features: Michael Jibson, MD, Psychiatry Department speaking about "Psychiatry, Law, and Society: Ethical and Legal Issues in Mental Health"

Lunch provided!

Please join us for a lively discussion of medical ethics. The Bioethics Grand Rounds is co-sponsored by the Center for Bioethics and Social Sciences in Medicine, the UMHS Adult and Pediatric Medical Ethics Committee, and the Program of Society and Medicine. This educational session is open to all faculty and staff and members of the public. CME credit is available. 

To meet ACCME requirements for Faculty Planner disclosure and Presenter Disclosure to participants of CME activities at UM, please be advised that the following faculty planner(s)/co-planner(s) and presenter have no personal financial relationships relevant to the activity listed below:
Planners: 

  • Andrew Shuman, MD
  • Christian Vercler, MD

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