Scott Kim, MD, PhD, is a Senior Investigator in the Department of Bioethics at the National Institutes of Health and Adjunct Professor of Psychiatry at the University of Michigan. Dr. Kim studies research ethics, especially the ethics of involving decisionally impaired persons in research, the ethics of high-risk research, and methodological issues in empirical bioethics research. He is also interested in the interface of conceptual and empirical methods of bioethics scholarship. Prior to joining the NIH, Dr.
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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.
With just a simple search term and a click of the mouse, a person can find a large amount of health information on the Internet. What role does the Internet play in how patients make medical decisions? Does using the Internet as a source for information to help patients make informed decisions vary by health condition? Does the Internet substitute for detailed discussions with a health care provider?
Consider the following:
Imagine that you recently visited your health care provider for an annual physical examination. During the exam your doctor told you that you are at the age where you should start thinking about getting a screening test for colon cancer. In this conversation your health care provider explained some of the reasons why you should get screened. At the end of the visit, you had more information about screening tests for colon cancer but had not yet decided whether or not you wanted to get tested.
- Don't know
How do your answers compare?
In a recent study published in the journal Medical Decision Making, CBSSM investigators Brian Zikmund-Fisher, Mick Couper, and Angela Fagerlin examined Internet use and perceived importance of different sources of information by patients making specific medical decisions.
In this study, US adults aged 40 years and older were asked about how they got information about 9 common medical decisions, including decisions about common prescription medication (for high blood pressure, cholesterol, and depression), cancer-screening tests (for colorectal, breast, and prostate cancer), and elective surgeries (for lower back pain, cataracts, and knee/hip replacement). In addition, they study compared participants' ratings of the Internet as a source of information with their ratings of other sources, such as their health care provider.
So, how did your responses compare to the average adult in this study's population?
Results from this study showed that most patients did not use the Internet to make specific medical decisions like the ones you considered. On average, about 26% of participants made use of the Internet for information to make decisions about colon cancer screening tests and about 47% used it to inform a decision about lower back pain surgery.
Among participants who chose to use the Internet for finding information about specific medical decisions, data show that Internet use varies significantly across different types of medical decisions. Internet users were more likely to use the Internet for information related to elective surgery (36%), such as lower back pain surgery, and prescription medication (32%) than for cancer-screening decisions (22%), such as colon cancer screening.
Another element of this study looked at participants' ratings of different information sources. You are unlike other participants in this study in that you did not consistently rate health care providers as the most important source for information about colon cancer screening and lower back pain surgery. The CBSSM study found that, for both Internet users and nonusers, health care providers were rated highest as a source for information for all 9 decisions studied. Among Internet users, however, the Internet was rated as their 2nd-most important source of information.
The researchers found that Internet use to inform specific medical decisions varied by age ranging from 38% for those aged 40 to 49 years to 14% for those aged 70 years or older. Approximately 33% of 50 to 59 year olds used the Internet to make these medical decisions and 24% for those in the 60 to 69 year age category. This result is consistent with previous research on the demographics of Internet use.
The study authors concluded that the Internet has an impact on people's access to health care information; however, "the data suggest that access is not the same as use, and use for one medical decision does not imply use for all health decisions." In other words, people use the Internet differently depending on the context. The authors end by stating, "Clinicians, health educators, and health policy makers need to be aware that we remain a long way away from having Internet-based information sources universally used by patients to improve and support the process of medical decision making."
For the full text of this article:
Couper M, Singer E, Levin CA, Fowler F, Fagerlin A, Zikmund-Fisher BJ. Use of the internet and ratings of information sources for medical decisions: Results from the DECISIONS survey. Medical Decision Making 2010;30:106S-114S.
Funded by National Institutes of Health
Funding Years: 2015-2020
Deaf American Sign Language (ASL) users are nearly seven times more likely to have inadequate health literacy when compared with their hearing peers. This population is the non-English speaking minority group at greatest risk for miscommunication in health care settings. Health literacy mechanisms for deaf individuals remain poorly understood, thereby limiting interventions to address health literacy disparities and their impact on health care. It is unclear how differences in attitudes, knowledge, and skills related to health information affect health literacy in deaf populations and how they may contribute to ongoing health inequities. The two primary objectives of this proposal are: 1) to elucidate the role of information marginalization on health literacy in Deaf American Sign Language (ASL) users and 2) to better understand the mechanisms of health literacy in this population so as to identify viable targets for future health literacy intervention development. This proposal is responsive to PAR-10-133's request for studies that assess mechanisms underlying health literacy, including roles of cognition, culture, language fluency, and information-seeking and interpretation ability in the deaf population and, how these may differ from the hearing population. To meet the study objectives, we will employ an explanatory sequential mixed methods design using extensive quantitative data collection procedures, namely, cross-sectional surveys and measures that will identify predictors and moderators of health literacy with 450 deaf and 450 hearing subjects across three geographically diverse sites. These results will inform the subsequent qualitative assessment that will help explain the quantitative results, and elucidate how and why deaf individuals access and understand health information. We will incorporate cutting edge technology to assess health information-seeking and interpretation patterns in this population, in addition to using a variety of validated and ASL-accessible instruments to assess health literacy and other constructs related to health literacy. The diverse team, consisting of both leading deaf and hearing researchers, provides a unique insight into how health information is distributed and disseminated visually. This approach has the potential to generate rich data on how to formulate health information and health literacy interventions for individuals with hearing loss.
PI(s): Michael McKee
Co-I(s): Lorraine Buis, Michael Fetters, Ananda Sen
What is the impact of medical advertising that is directly targeted at patients? What information do consumers of medical products and therapies need in order to make informed decisions about their health?
Consider the following:
Ms. J, a healthy 50-year old woman, drives by a billboard that advertises low-dose spiral computed tomography (CT) scanning to screen for lung cancer. Although she has no family history of cancer and has never smoked, several of Ms. J’s friends have been diagnosed with cancer recently. She worries that she herself may have an undetected malignancy.
Responding to this advertising, Ms. J decides to pay out-of-pocket for a CT scan at the imaging center advertised on the billboard. The radiologist at this imaging center profits from the number of scans interpreted. As a result of the CT scan, an abnormality is found, and Ms. J undergoes a biopsy of her lung. A complication occurs from this procedure, but Ms. J recovers, and the biopsy comes back negative. She is relieved to learn that she does not have lung cancer.
After reading this scenario and thinking about direct-to consumer medical advertising, which of the following statements best represents your views?
- STATEMENT A: Direct-to-consumer advertising improves patient education and patient-physician communication. Such advertising informs and empowers patients, so that their health care better reflects their needs and values. In particular, certain health services require complex medical equipment with high capital costs. Physicians who invest in such equipment do so because they believe in its promise, and they deserve payment to recoup their investment.
- STATEMENT B: Direct-to-consumer advertising often results in misunderstanding, increased costs, and disruption of the patient-physician relationship. Such advertising can skew information to portray products in a positive light and can prey upon patients’ fears. Physicians closely allied with a treatment cannot offer objective assessment to patients about the efficacy or risks of the treatment. Further, most patients are ignorant of the financial incentives to physicians for various procedures.
- STATEMENT C: I have not formed a viewpoint on direct-to-consumer medical advertising.
How do your answers compare?
CBDSM's Reshma Jagsi, MD, DPhil, has written a powerful challenge to the medical profession and medical industries in a recent issue of the Journal of Clinical Oncology. Dr. Jagsi argues that the increasing proliferation of direct-to-patient advertising has raised questions of how physicians can function as unbiased intermediaries between patients and industry.
In the article, she presents six case studies, one of which has been excerpted and adapted for this Decision of the Month. Dr. Jagsi uses these case studies to address serious issues related to both advertising and conflict of interest. Some examples:
- What implications does the frequently used advertising directive "Ask your doctor about X" have for the doctor-patient relationship?
- How ethical is it to disguise medical advertising—for instance, to hire celebrities to discuss treatments during interviews?
- Should a physician who prescribes a particular medical device be allowed to receive payment from the speakers' bureau of a company that produces that medical device?
- Should a physician who holds an ownership interest in an expensive treatment machine be required to explain alternate treatments to patients?
- When does a website about a medical treatment cross over from being informational to being promotional?
Dr. Jagsi argues that physicians have a strong ethical responsibility to their patients to call attention to potential conflicts of interest and to help interpret medical information in the best interests of their patients.
For more details about this study:
Should people with more severe health problems receive state funding for treatment before people with less severe health problems? See how your opinion compares with the opinions of others.
Imagine that you are a government official responsible for deciding how state money is spent on different medical treatments. Your budget is limited so you cannot afford to offer treatment to everyone who might benefit. Right now, you must choose to spend money on one of two treatments.
- Treatment A treats a life threatening illness. It saves patients' lives and returns them to perfect health after treatment
- Treatment B treats a different life threatening illness. It saves patients' lives but is not entirely effective and leaves them with paraplegia after treatment. These patients are entirely normal before their illness but after treatment will have paraplegia.
Suppose the state has enough money to offer Treatment A to 100 patients. How many patients would have to offered Treatment B so that you would have difficulty choosing which treatment to offer?
How do your answers compare?
The average person said that it would become difficult to decide which treatment to offer when 1000 people were offered Treatment B.
What if you had made another comparison before the one you just made?
In the study, some people were asked to make a comparison between saving the lives of otherwise-healthy people and saving the lives of people who already had paraplegia. After they made that comparison, they made the comparison you just completed. The average person in that group said it would take 126 people offered Treatment B to make the decision difficult. The differences are shown in the graph below
Why is this important?
The comparison you made is an example of a person tradeoff (PTO). The PTO is one method used to find out the utilities of different health conditions. These utilities are basically measures of the severities of the conditions. More severe conditions have a lower utility, and less severe conditions have a higher utility, on a scale of 0 to 1. Insurance companies, the government, and other organizations use these utilities as a way to decide which group to funnel money into for treatments.
On the surface, it seems like basing the money division on the severity of a condition is a good and fair method, since theoretically the people who are in the greatest need will be treated first. However, the PTO raises issues of fairness and equity that aren't accounted for in other utility elicitation methods like the time tradeoff (TTO) and rating scale (RS).
For example, when asked to decide how many people with paraplegia would have to be saved to equal saving 100 healthy people, many people say 100; that is, they think it is equally important to save the life of someone with paraplegia and a healthy person. Going by values obtained using the TTO or RS, an insurance company may conclude that 160 people with paraplegia (using a utility of .6) would have to be saved to make it equal to saving 100 healthy people. This would mean that less benefit would be gotten by saving someone with paraplegia, and thus they might not cover expenses for lifesaving treatments for people with paraplegia as much as they would for a healthy person. The PTO shows that many people would not agree with doing this, even though their own responses to other utility questions generated the policy in the first place.
For more information see:
Informal caregiving for relatives (parents, grandparents, spouses) can be time consuming. Can we attach dollar value to that time? Is everyone's time worth the same amount?
Imagine that your mother is suffering from moderate dementia and needs assistance with daily activities such as bathing and dressing. You are the only person available to care for her, as you are an only child and your father has passed away. On average, your mother will need about 2 to 3 hours of help per day, or 17 hours per week total.
- His is worth more
- His is worth the same amount
- His is worth less
How do your answers compare?
According to a study done to determine the costs of informal caregiving, the average value of the time spent giving care to someone with moderate dementia was about $7400. This was calculated using an average time of about 900 hours per year, at the mean wage for a home health aide in 1998 of $8.20 per hour.
What if the person you're caring for has less or more severe dementia?
As you might imagine, the cost of informal care differs depending on the severity of dementia. People with mild dementia don't need as much care (8.5 hours per week), and those with severe dementia need much more (41.5 hours per week). The amount of care needed directly impacts the estimated cost of care:
|Dementia severity||Hours of care per week||Estimated cost of informal care|
Why is this important?
As the Baby Boomer generation ages, the number of people needing informal care is going to increase dramatically. In order to make informed policy decisions regarding care for older people, the government will need an estimate of the value of informal care. A major obstacle to this is that there is no set way for making the estimates.
Earlier, you said that Bill Gate's caregiving time would be worth the same amount as yours. That implies that basing national estimates of caregiving costs on average wages would be the proper way to go about the calculations, since it means everyone's time is equally valuable.
However, some people think that not everyone's time is of equal value. In that case, using average wages to estimate the total cost of caregiving may not lead to an accurate representation. If one group of people is more likely to provide care than another group, then the average value of all caregivers' time may not be the same as the average of all peoples' time. This would possibly lead to an over- or underestimation of caregiving costs, depending on the value of the time of common groups of caregivers. Even without an agreed-upon estimation method, some valuable data can be generated.
The estimation method used in this study likely led to conservative figures, so the true costs of informal caregiving are probably higher than reported here. Even using this conservative method, the costs to society are staggering. The researchers estimated that the cost of informal caregiving for dementia alone in 1998 was $18.6 billion, which is almost two-thirds as much money as that actually spent on paid home care services for all conditions, not just dementia! That figure will grow considerably in the not-so-distant future when the Baby Boomers begin to need caregiving, whether formal or informal, and will likely have a large impact not just on health care systems, but on society as a whole as more and more people are called on to provide informal care.
For more information see:
CBSSM Postdoctoral Research Fellow, Kayte Spector-Bagdady presented the keynote address at the 2015 International Association of Clinical Research Nurses (IACRN) 7th Annual Conference. Her talk was entitled, “Why We've Always Needed Ethics: Grants, Research, and the Law."
This will be the first year that CBSSM will be participating in Researchpalooza. Please come and enjoy the fun!
Wednesday, August 27, 2014
11:00 a.m. - 2:00 p.m.
Circle Drive in front of Med Sci I
All UMHS employees from the Hospitals and Health Centers and Medical School are invited to celebrate this annual event.
Stop by the University Hospital Courtyard and Medical School Circle Drive for:
- Ice Cream sundaes and sugar-free alternatives
- Karaoke and musical entertainment
- Festival Games
- Department and vendor tables with information and giveaways
Dr. Angela Fagerlin was elected to serve on the Senate Advisory Committee on University Affairs (SACUA). The committee is executive arm of the University Senate and of the Senate Assembly. SACUA meets weekly and consists of nine members of the Senate Assembly elected by the Assembly for three-year terms. Read more.