Dr. Aisha Langford was a VA and CBSSM Postdoctoral Research Fellow, 2013-2015. She received her PhD from the department of Health Behavior and Health Education at the University of Michigan School of Public Health in Ann Arbor. From 2007 -2013, she directed the University of Michigan Comprehensive Cancer Center’s Community Outreach Program. Her research interests include chronic disease prevention and control, health communications, medical decision making, and clinical trial participation. Aisha is from the San Francisco Bay Area and earned her BA from the University of Virginia.
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Reshma Jagsi, MD, DPhil
Title – "Ethical Issues Related to Fundraising from Grateful Patients"
Abstract: Health care institutions are becoming increasingly deliberate about philanthropic fundraising given the need to sustain their missions in the face of decreases in governmental research funds and lowering reimbursement for clinical care. Donations from grateful patients constitute 20% of all philanthropic contributions to academic medical centers, totaling nearly $1 billion a year in recent years. Institutions frequently employ development professionals to facilitate philanthropy. The development literature describes various approaches for identifying patients capable of contributing, cultivating potential donors, and engaging physicians in the solicitation of grateful patients, emphasizing that patients themselves may also benefit from exercising altruism in this way. However, little evidence exists to guide the ethical practice of grateful patient fundraising, and concerns exist regarding privacy and confidentiality, patient vulnerability, and physicians' conflicts of obligations in this context. Therefore, we will discuss how the process of philanthropic development should be structured in order to demonstrate respect for all persons involved, including patients who donate, those who might consider donation, those who do not wish to donate, and those who cannot afford to do so.
Lunch is provided. Please note: Lunch is first come, first served.
People in the U.S. make decisions about their health on a regular basis. For example,they are often asked to consider taking medication to treat common health problems, such as hypertension. But do patients have sufficient information to make these decisions? And what factors might influence the knowledge patients have, and their treatment decisions?
Consider this scenario:
Bob is a 52-year-old man who went to see his physician for a routine check-up. Bob’s doctor told him his cholesterol levels were slightly elevated and suggested cholesterol medication. Bob wondered how long he would have to take the medication, and whether there would be any side effects. Please answer the following two questions about cholesterol medications.
When people start taking cholesterol medications, how long is it usually recommended that they take them?
- less than 6 months
- 6-12 months
- 1-3 years
- for the rest of their lives
How do your answers compare?
Making an informed medical decision about whether to take cholesterol medications depends, at least in part, on understanding how long a medication should be taken and whether there are side effects. CBSSM investigators Angela Fagerlin, Mick Couper, and Brian Zikmund-Fisher recently published an article on patient knowledge from the DECISIONS study, a large survey of U.S. adults about common medical decisions. One main objective of the study was to determine adults’ knowledge about information relevant to common types of medication, screening, or surgery decisions they recently made. Data were collected from 2575 English-speaking adults aged 40 years and older who reported having discussed common medical decisions with a health care provider within the previous two years. Participants answered knowledge questions and rated the importance of their health care provider, family/friends, and the media as sources of information about common medical issues.
People taking cholesterol medications usually should take them for about 3 or more years, and perhaps even for the rest of their lives. A little more than 60% of the study respondents accurately identified the time to take cholesterol medications.
Many people have trouble with this question and do not know that muscle pain is the most commonly reported side effect of cholesterol medications. Only 17% of DECISIONS study respondents were able to answer this question correctly. About 1 in 5 respondents incorrectly identified liver problems as the most common side effect of cholesterol medications.
Overall, the investigators found that patient knowledge of key facts relevant to recently made medical decisions was often poor. In addition, knowledge varied widely across questions and decision contexts. For example, 78% of patients considering cataract surgery correctly estimated typical recovery time, compared to 29% of patients considering surgery for lower back pain or 39% of patients considering a knee or hip replacement. Similarly, in thinking about cancer screening tests, participants were more knowledgeable of facts about colorectal cancer screening than those who were asked about breast or prostate cancer. Respondents were consistently more knowledgeable on questions about blood pressure medication than cholesterol medication or antidepressants.
The impact of demographic characteristics and sources of information also varied substantially. For example, black respondents had lower knowledge than white respondents about cancer screening decisions and medication, even after controlling for other demographic factors. Researchers found no race differences for surgical decisions, however.
The authors concluded by noting that improving patient knowledge about risks, benefits, and characteristics of medical procedures is essential to support informed decision making.
For more information:
Michael D. Fetters, MD, MPH, MA, Associate Professor, was a co-presenter at the 38th annual North American Primary Care Research Group (NAPCRG) meeting held November 13-17, 2010, in Seattle, WA.
Rating your satisfaction with your life may not be a completely personal decision. See how your satisfaction rating may be influenced by others.
When answering this question, imagine that there is someone in a wheelchair sitting next to you. They will also be answering this question, but you will not have to share your answers with each other.
How satisfied are you with your life in general?
Extremely satisfied 1 2 3 4 5 6 7 8 9 10 Not at all satisfied
How do you compare to the people surveyed?
You gave your life satisfaction a rating of 1, which means that you are extremely satisfied with your life. In a study done where people with a disabled person sitting next to them wrote down their life satisfaction on a questionnaire, they gave an average life satisfaction rating of 2.4, which means they were very satisfied with their lives.
What if you'd had to report your well-being to another person instead of writing it down?
In the study, half the people had to report their well-being in an interview with a confederate (a member of the research team who was posing as another participant). When the participants had to report in this way, and the confederate was not disabled, the participants rated their well-being as significantly better than those who reported by writing it on the questionnaire in the presence of a non-disabled confederate (2.0 vs. 3.4, lower score means higher well-being). The scores given when reporting to a disabled confederate elicited a well-being score that was no different than that when completing the questionnaire in the presence of a disabled confederate (2.3 vs. 2.4).
Mean life satisfaction ratings, lower score means higher satisfaction
|Mode of rating well-being||Disabled confederate||Non-disabled Confederate|
What caused the difference in well-being scores?
When making judgments of well-being, people (at least in this study) tend to compare themselves to those around them. This effect is seen more when well-being was reported in an interview than when the score was privately written down, due to self-presentation concerns. A higher rating was given in public so as to appear to be better off than one may truly feel. Note that the effect was only seen in the case where the confederate was not disabled. While well-being ratings were better overall with a disabled confederate, there was no difference between the private and public ratings. Social comparison led to a better well-being judgment, but it appears that the participants were hesitant to rate themselves too highly in front of the disabled person for fear of making the disabled person feel worse.
Why is this important?
Subjective well-being is a commonly used measure in many areas of research. For example, it is used as one way to look at the effectiveness new surgeries or medications. The above studies show that SWB scores can vary depending on the conditions under which they are given. Someone may give a response of fairly high SWB if they are interviewed before leaving the hospital, surrounded by people more sick than they are. From this, it would appear as though their treatment worked great. But suppose that they are asked to complete a follow-up internet survey a week later. Since they do not have to respond to an actual person face-to-face, and without being surrounded by sick people, they may give a lower rating than previously. Is this because the treatment actually made their SWB worse over the longer term, or simply because a different method was used to get their response? The only way to really know would be to use the same methodology to get all their responses, which might not always be feasible. These are important considerations for researchers to keep in mind when analyzing results of their studies. Are the results they got the true SWB of their participants, or is it an artifact of how the study was done? And is there a way to know which measure is right, or are they both right which would lead to the conclusion that SWB is purely a momentary judgment based on a social context?
For more information see:
Strack F, Schwarz N, Chassein B, Kern D, Wagner D. Salience of comparison standards and the activation of social norms: Consequences for judgements of happiness and their communication. British Journal of Social Psychology. 29:303-314, 1990.
Funded by Patient-Centered Outcomes Research Institute (PCORI)
Funding Years: 2013 - 2015.
Every year, more than 100,000 patients start dialysis to treat kidney failure in the United States. Two types of dialysis are available: hemodialysis (HD) and peritoneal dialysis (PD). HD is done with a machine in a dialysis clinic. PD can be done at home, if the patient or family is willing to perform his or her dialysis treatments. In general, patients survive as long on HD as they do on PD. Based on specific clinical parameters and a patient’s needs, one of the two dialysis types is usually going to be a better fit for a given patient. For example, older patients may not want to be responsible for performing their own treatment, and HD may be a better fit for them. On the other hand, PD may be a better choice for patients who want to be able to travel. The challenge for patients with kidney failure is to identify the dialysis type that best fits their lifestyle. However, there is very little information regarding factors that are important to patients starting dialysis, and often patients choose a dialysis type without fully understanding how it will impact their lives. Patients and their families need more information to be able to make better decisions. PD use is much lower in the United States than in other countries, perhaps reflecting the fact that many patients are not given appropriate information regarding this type of dialysis. Given recent financial pressure on kidney doctors to treat more patients with PD, it is even more important that patients receive better information when making a decision regarding dialysis type. The goal of this study is to identify factors that matter the most to patients with kidney disease and study how they are impacted by different types of dialysis. To understand what is most important to them, we will interview more than 130 patients with kidney disease, some before and some after they start dialysis. We will compare factors reported as important across different types of patients; for example, among men and women, or among those who work outside of the house and those who do not. Using the infrastructure of an existing study of more than 6,800 dialysis patients, we will compare factors identified during the interviews between patients treated with HD and PD. Based on these results, we will develop a Web site presenting information on kidney disease and questions on personal preferences, which will help patients understand which dialysis type is better for them. Results from our study will provide practical information regarding the choice of dialysis type to patients with kidney disease and their families. Patients who are better informed will be able to identify and choose the best dialysis type for their lifestyle and needs. Providing scientific evidence to help patients in their decision process is of great importance, especially at such a stressful time in their lives.
PI(s): Angela Fagerlin, Laurie Lachance, Yi Li, Julie Wright
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."
Funded by National Institutes of Health.
Funding Years: 2013-2017.
The clinical management of patients with cancer does not entail a "one size fits all" approach. In fact, studies of the genomic landscape of human cancers have demonstrated that cancers can have a multitude of mutations, a subset of which may be "actionable" with current drugs. Thus, the personalization of therapy for cancer will require molecular characterization of unique and shared genetic aberrations. In particular, patients who have advanced / refractory cancer and are candidates for clinical trials could potentially benefit by identifying eligibility for "targeted" drugs based on the "actionable" genesin their specific tumor. Growing technological advances in genomic sequencing has now made it possible to consider the use of sequence data in a clinical setting. Thus, the translation of high throughput sequencing would support a "personalized" strategy for cancer. However, the translation of clinical sequencing bears unique challenges including identifying patients who could benefit, developing informed consent and human subjects protections, outlining measurable outcomes, interpreting what results should be reported and validated, and how results should be reported. This proposal brings together expertise at the University of Michigan including clinical oncology, cancer genetics, genomic science/bioinformatics, clinical pathology, social and behavioral sciences, and bioethics in order to implement this clinical cancer sequencing project. We have focused our clinical sequencing effort on sarcomas and other rare cancers as this is an area of clinical strength at Michigan. Three integrated Projects have the following themes: Project 1) "Clinical Genomic Study" will identify patients with advanced or refractory sarcoma or rare cancers who are eligible for clinical trials, consent them to the study obtain biospecimens (tumor tissue, germline tissue), store clinical data, and assemble a multi-disciplinary Sequencing Tumor Board to deliberate on return of actionable or incidental genomic results; Project 2) "Sequencing & Analysis" will process biospecimens and perform comprehensive sequencing and analysis of tumors to identify point mutations, copy number changes, rearrangements/gene fusions, and aberrant gene expression under CLIA/CAP guidelines; Project 3) "Ethics & Psychosocial Analysis" will evaluate the clinician and patient response to the informed consent process, delivery of genomic sequence results, and use of genomic results.
PI(s): Arul Chinnaiyan (Main Study PI), Scott Roberts (Project 3 PI)
Co-I(s): Ajjai Alva, Rashmi Chugh, Ray De Vries, Jeffrey Innis, Lakshmi Kunju, Rohit Mehra, Nallasivam Palanisamy, Dan Robinson, Moche Talpaz, Scott Schuetze, David Smith, Elena Stoffel, Scott Tomlins, Brian Zikmund-Fisher
The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium was held Tuesday, March 17, 2015 at the Founders Room, Alumni Center, 200 Fletcher St., Ann Arbor, MI.
The CBSSM Research Colloquium featured the Bishop Lecture in Bioethics as the keynote address. Lawrence O. Gostin, J.D., LL.D (Hon.) presented the Bishop Lecture with a talk entitled: "Law, Ethics, and Public Health in the Vaccination Debates: Politics of the Measles Outbreak."
Lawrence Gostin is University Professor, Georgetown University’s highest academic rank conferred by the University President. Prof. Gostin directs the O’Neill Institute for National and Global Health Law and is the Founding O’Neill Chair in Global Health Law. He is Professor of Medicine at Georgetown University, Professor of Public Health at the Johns Hopkins University, and Director of the Center for Law & the Public’s Health at Johns Hopkins and Georgetown Universities. Prof. Gostin is also the Director of the World Health Organization Collaborating Center on Public Health Law & Human Rights.
The 2015 Research Colloquium Presentation Schedule:
- 8:30 AM -- Check in & refreshments
- 9:00 AM -- Welcome
- 9:15 AM -- Aaron Scherer, PhD, CBSSM Postdoctoral Fellow: "Elephants, Donkeys, and Medicine: Political Differences in Health Risk Perceptions and Adherence to Medical Recommendations"
- 9:45 AM -- Natalie Bartnik, MPH, Research Associate, HBHE Genetics Research Group, UM School of Public Health: "Why, how and when oncologists disclose genome sequencing results in clinical practice"
- 10:15 AM -- Michele Gornick, PhD, MICHR PTSP Postdoctoral Fellow, VA HSRD Fellow & CBSSM Research Investigator: "Information and deliberation make a difference: The public’s preferences for the return of secondary genomic findings"
- 10:45 AM -- Break
- 11:00 AM -- Lawrence O. Gostin, JD, LLD (Hon.), 2015 Bishop Lecture in Bioethics: "Law, Ethics, and Public Health in the Vaccination Debates: Politics of the Measles Outbreak"
- 12:30 PM -- Lunch
- 1:30 PM -- Stephanie Kukora, MD and Nathan Gollehon, MD, Fellows, Division of Neonatal-Perinatal Medicine, Department of Pediatrics, UM Mott Children’s Hospital: "Epidemiology of outpatient prenatal consultation: implications for decision-making and perinatal outcomes"
- 2:00 PM -- Minnie Bluhm, PhD, MPH, Assistant Professor, School of Health Sciences, Eastern Michigan University: "Oncologists' decisions about administering late chemotherapy: What makes it so difficult?"
- 2:30 PM -- Break
- 2:45 PM -- Danielle Czarnecki, PhD Candidate, UM Department of Sociology: "Moral Women, Immoral Technologies: How Devout Women Negotiate Maternal Desires, Religion, and Assisted Reproductive Technologies"
- 3:15 PM -- Uchenna Ezeibe, MD, Resident Physician, UMHS Department of Pediatrics & Communicable Diseases: "Pediatric Ethics Consultation Service at a Tertiary Hospital: A Retrospective Review"
Dr. Lewis B. Morgenstern was one of the 21 Med School faculty/staff members who received honors through the Dean's Awards program. He received the Clinical and Health Services Research Award, which recognizes a faculty member or group of faculty members who are identified as having made outstanding contributions to the Medical School in clinical or health services research. You can read the press release here.