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Funded by National Institutes of Health.

Funding Years: 2013-2018

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

Internet Survey Lab

Overview

The Internet Survey Lab at the Center for Bioethics and Social Sciences in Medicine (CBSSM), led by Dr. Brian Zikmund-Fisher, facilitates the programming of complex experimental designs, using the graphical and interactive capabilities of the Internet. CBSSM has extensive experience in developing, programming and conducting survey research using Internet-based methodologies. 

Why We Use the Internet

A key advantage of Internet surveys is that they can shape and direct a user's experience in response to computer generated randomization and/or respondents' own answers to questions earlier in the survey. Additionally, page and answer order can be truly randomized as appropriate to limit cognitive biases. The unique advantage of Internet surveys, however, is that many different types of stimuli can be randomized or varied; static visual images, movies, or sounds can all be used in addition to text. Furthermore, the nature of the browser interface enables user-directed interactivity, such as user-adjustable risk communication graphics, that provide unique opportunities for both knowledge communication and response assessment.

Using the Internet to conduct survey research is also very efficient: we can develop and test surveys in only a few months' time, and once a survey is ready, large scale data collection (e.g., 1500-3000 completed surveys) can be completed in only 2-3 weeks.  Such surveys can also be cost effective, since while significant effort goes into development, creation, and testing of the survey, almost no personnel effort is required for data collection, entering, coding, or cleaning.  In addition, oftentimes several small surveys can be combined into a single instrument, creating further efficiencies.

Sometimes, our studies use large, demographically diverse samples obtained through commercial survey research firms. This methodology allows us to tailor the population being surveyed on multiple demographic variables (e.g., sampling only women age 40-75 for a study about breast cancer treatments) and provides us with ample statistical power to conduct multi-factorial experimental tests. Other times, we use more inexpensive samples from Amazon Mechanical Turk (MTurk) for quick pilot testing or to enable rapid, iterative testing of designs. Regardless, the use of randomized designs ensures high internal validity for the research despite the use of an Internet-only sample.

CBSSM Surveys

CBSSM has had considerable success using this methodology, publishing multiple manuscripts in highly regarded peer-reviewed journals. Studies that have used this methodology have addressed a variety of topics, including:

  • The use of pictographs to display risk (20082008, 2014) including in comparison to other graphical formats (2008, 2010, 2010). 
    Note: to create your own pictographs, see www.iconarray.com.
  • Misprediction of happiness between younger and older adults (2005)
  • Elicitation of utility and willingness to pay (200720072008)
  • Research ethics, e.g., participation of mentally vs. medically ill in research (2005)
  • Risk communications that emphasize incremental risks instead of absolute risks (2008)
  • Simplifying risk communications about adjuvant therapy options (2008).
  • Effect of risk labels on prenatal screening decisions (2007).
  • Time-insensitivity in people's understanding of survival curves (20052007)
  • Self-other discrepancies in medical decisions (20062008)
  • Sequential vs. all at once presentations of risk information (2011)
  • Testing of animated or interactive risk graphics (2011, 2012, 2014)
  • Optimal levels of precision in risk communications (2011, 2012)
  • Framing of health promotion messages (2012)
  • Exploration of role of narratives in decision making (2010)
  • Values Clarification (2015)
  • Intuition and Deliberation in Decision Making (2015)

Contact Us

For questions about our methods or inquiries about potential Internet survey research collaborations, please contact Brian Zikmund-Fisher at bzikmund@umich.edu.

Jody Platt, PhD, MPH

Faculty

Jody Platt, PhD, MPH is an Assistant Professor in the Department of Learning Health Sciences, Division of Learning and Knowledge Systems. She received her MPH and PhD from the University of Michigan School of Public Health in health policy, with a concentration in medical sociology. Her research interests are in trust in health and health care, and the ethical, legal, and social implications of learning health systems, precision medicine, and big health data.

Last Name: 
Platt

On Thursday, May 19, at 4:30 pm in the Alumni Center, the Inaugural Bishop Lecture in Bioethics was held.  Established by a generous gift from the estate of Ronald C. and Nancy V. Bishop, both graduates of the University of Michigan Medical School (Class of '44), the inaugural address was given by John D. Lantos, MD, in a talk entitled, "The Complex Ethical Mess Surrounding Genetic Testing in Children." 

Dr. Lantos is the Director of the Children's Mercy Bioethics Center in Kansas City and is a leading voice in bioethics.  He has authored or edited five books and numerous publications, including Do We Still Need Doctors?, The Lazarus Case, Neonatal Bioethics, and The Last Physician: Walter Percy and the Moral Life of Medicine.  Lantos has discussed designer babies on Larry King Live, medical errors on Oprah, and ethics consultations on Nightline.  The Center for Bioethics and Social Sciences in Medicine co-sponsored the event.  Over 75 people attended the lecture, which was followed by a reception.

 

John D. Lantos, MD

 

Michael Fetters, MD, MPH, MA

Faculty

I serve as Professor of Family Medicine, Director of Japanese Family Health Program, and Co-Director of the Michigan Mixed Methods Research and Scholarship Program at the University of Michigan. In addition to being a family/general doctor fluent in Japanese, I have long been interested in the influence of culture on medical decision making and ethics, and have conducted numerous health research projects, and published numerous papers in English and Japanese.

Research Interests: 
Last Name: 
Fetters

Announcement of Position: Faculty Ethicist

Announcement of Position: Faculty Ethicist


Background
The Clinical Ethics Service within the Center for Bioethics and Social Sciences in Medicine (CBSSM) promotes a culture of patient-centered excellence by performing a comprehensive set of ethics-related activities. The aims of this service are to: liaise with and provide support to the adult and pediatric ethics committees; provide clinical ethics consultation and engage in preventative ethics endeavors; assist with ethics-related policy development on a regular and proactive basis; organize and administer structured educational programs in clinical ethics; and coordinate empiric research with relevance to clinical ethics within CBSSM.

Program Organization
The Clinical Ethics Service is led by Christian J. Vercler, MD MA and Andrew G. Shuman, MD. A dedicated clinical ethicist will manage the program on a daily basis. A cadre of faculty ethicists will rotate on service throughout the year and work closely with the clinical ethicist. Trainees and students will rotate as well. Dedicated administrative support is organized through CBSSM.


Position
The Clinical Ethics Service employs a roster of faculty ethicists who are responsible for staffing ethics consultations arising from any of the clinical venues (inpatient and outpatient; adult and pediatric) within Michigan Medicine during their time on service. They will supervise and participate in the institutional educational endeavors and preventative ethics rounds in a regular and on-going manner. Faculty ethicists will also develop and provide clinical rotations for medical students and house officers on a cohesive ethics service. Each faculty member will be expected to rotate on service for four to six weeks per year, and attend/participate in committee meetings and other events throughout the academic year (this will not necessarily require suspension of other activities when on-service). Depending on the total number appointed, each faculty ethicist will receive $15,000-$20,000 of direct salary support annually, to be distributed and allocated in conjunction with their home department. The initial appointment will last two and a half years and is renewable. Additional appointments will last two years.


Qualifications
Candidates are expected to have faculty appointments at University of Michigan and be in good academic standing; any professional background is acceptable. Candidates are expected to have qualifications that meet the standards outlined by The American Society for Bioethics and Humanities (ASBH) for accreditation for clinical ethics consultants. Direct experience with clinical ethics consultation is required. Familiarity with ethics education and related clinical research would be helpful. Excellent organizational and communication skills across multidisciplinary medical fields are required.


Application Process
Candidates will be vetted and chosen by a selection committee. Candidates are asked to submit:

  • Curriculum vitae or resume
  • One page maximum summary of (1) education/training related to ethics consultation; (2) clinical ethics consultation experience; and (3) motivation/interest in the position
  • Letter of support from Department Chair/Division Head/Center Director or equivalent
  • Submit formal application via email to: lynnam@med.umich.edu


Timeline

  • Application is due September 25, 2017
  • Appointment will take effect January 1, 2018

Contacts

  • Leaders of the Clinical Ethics Service: Christian J. Vercler, MD MA & Andrew G. Shuman, MD
  • Administrative contact: Valerie Kahn – valkahn@med.umich.edu 734 615 5371

2017 CBSSM Research Colloquium and Bishop Lecture (Norman Daniels, PhD)

Tue, April 25, 2017, 8:30am
Location: 
Great Lakes Room, Palmer Commons, 100 Washtenaw Ave, Ann Arbor, MI 48109

The Center for Bioethics and Social Sciences in Medicine (CBSSM) Research Colloquium was held Tuesday, April 25, 2017 at the Great Lakes Room, Palmer Commons, 100 Washtenaw Ave, Ann Arbor, MI 48109.

The CBSSM Research Colloquium featured the Bishop Lecture in Bioethics as the keynote address.  Norman Daniels, PhD presented the Bishop Lecture with a talk entitled: “Universal Access vs Universal Coverage: Two models of what we should aim for."

Norman Daniels, PhD is Mary B. Saltonstall Professor of Population Ethics and Professor of Ethics and Population Health in the Department of Global Health and Population at the Harvard School of Public Health. Formerly chair of the Philosophy Department at Tufts University, his most recent books include Just Health: Meeting Health Needs Fairly (Cambridge, 2008); Setting Limits Fairly: Learning to Share Resources for Health, 2nd edition, (Oxford, 2008); From Chance to Choice: Genetics and Justice (2000); Is Inequality Bad for Our Health? (2000); and Identified versus Statistical Lives (Oxford 2015). He has published 200 peer-reviewed articles and as many book chapters, editorials, and book reviews. His research is on justice and health policy, including priority setting in health systems, fairness and health systems reform, health inequalities, and intergenerational justice. A member of the IOM, a Fellow of the Hastings Center, and formerly on the ethics advisory boards of the CDC and the CIHR, he directs the Ethics concentration of the Health Policy PhD at Harvard and recently won the Everett Mendelsohn Award for mentoring graduate students.

2017 Colloquium Schedule:

  • 8:30     Check in, refreshments
  • 9:05     Welcome
  • 9:10     Presentation 1: “Setting priorities for Medicaid: The views of minority and underserved communities” Susan Goold, MD, MHSA, MA & Zachary Rowe, Executive Director, Friends of Parkside
  • 9:35     Presentation 2: ““How Acceptable Is Paternalism? A Survey-Based Study of Clinician and Non-clinician Opinions on Decision Making After Life Threatening Stroke” Kunal Bailoor, MD Candidate
  • 10:00   Medical Student in Ethics Award
  • 10:10   Presentation 3: “Ethical Challenges Faced by Providers in Pediatric Death: A Qualitative Thematic Analysis” Stephanie Kukora, MD
  • 10:35   Presentation 4: “Capacity for Preferences:  An overlooked criterion for resolving ethical dilemmas with incapacitated patients” Jason Wasserman, PhD & Mark Navin, PhD
  • 11:00   Break
  • 11:15  Bishop Lecture: Norman Daniels, PhD
  • 12:45  Lunch

MD vs. WebMD: The Internet in Medical Decisions (Dec-10)

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.

As you think about how you would make a decision about whether or not to get screened for colon cancer:
 
How important is your health care provider as a source of information about screening tests for colon cancer?
Not at all important (1) (2) (3) (4) (5) (6) (7) (8) (9) (10) Extremely important
 
Would you use, or have someone else use for you, the Internet to find information on screening tests for colon cancer?
 
  • Yes
  • No
  • Don't know
How important is the Internet as a source of information screening tests for colon cancer?
Not at all important (1) (2) (3) (4) (5) (6) (7) (8) (9) (10) Extremely important
 
 
 

How do your answers compare?

In a recent study published in the journal Medical Decision Making, CBSSM investigators Brian Zikmund-FisherMick 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 Brigham and Women's Hospital/Boston Univerity/NIH.

Funding Years: 2010-2013. 

In this continuation of the REVEAL Study, we will conduct a new randomized clinical trial to determine the psychological and health behavior changes associated with disclosing APOE genotype and 3-year Risk estimates to persons with mild memory problems. We will also create a new instrument that clinicians and researchers can use to reliably evaluate a patient's capacity to consent to genetic testing and examine long-term impact of genetic Risk assessment by following REVEAL Study patients 2-10 years following disclosure. For more information, visit NIH Reporter Link

PI(s): J. Scott Roberts 

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