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Thu, July 14, 2016

A new article in The Conversation authored by CBSSM Co-Director Raymond De Vries and colleague Tom Tomlinson from Michigan State University explores ethical concerns that may arise when patients donate blood and tissue samples to biobanks.

The article highlights results from their national survey, which indicated that respondents were not solely concerned with privacy, but had moral concerns about how their donations could be used in future research.

Wed, May 18, 2016

Reshma Jagsi’s survey of high-achieving physician-scientists published in JAMA, found that nearly a third of women reported experiencing sexual harassment. As women now make up about half of medical school students, the researchers emphasize the importance of recognizing unconscious bias as well as overtly inappropriate behaviors.

1. Reshma Jagsi, Kent A. Griffith, Rochelle Jones, Chithra R. Perumalswami, Peter Ubel, Abigail Stewart. Sexual Harassment and Discrimination Experiences of Academic Medical Faculty. JAMA, 2016; 315 (19): 2120 DOI: 10.1001/jama.2016.2188

Research Topics: 

Timothy R. B. Johnson, MD

Faculty

Timothy R. B. Johnson, M.D. served as Chair of Obstetrics and Gynecology at the University of Michigan from 1993-2017.  He is Bates Professor of the Diseases of Women and Children; and also Arthur F. Thurnau Professor; Professor, Women’s Studies, and Research Professor, Center for Human Growth and Development.  His education and training have been at the University of Michigan, University of Virginia and Johns Hopkins.

Research Interests: 
Last Name: 
Johnson

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

Would you participate if you knew this? (Mar-04)

When you decide to participate in a research study, what do you think the reserachers should inform you about?

Imagine that you have been diagnosed with depression. You see an ad in the local newspaper that a research group is studying a new drug for the treatment of depression and is recruiting people like yourself to participate. The study will investigate how effective the drug is at treating depression and will also look at whether the drug has any negative side effects.

Suppose the new drug is made by a small biotechnology company. The researcher owns a substantial portion of the stocks of the company. The value of the company's stocks can rapidly go up or down by large amounts depending on whether the drug is seen to be safe and effective for treating depression.

How important is it for you to know about the researcher's stock investment in the company before you consent to be in this study?

Do you think that the researcher should be required to tell you about his stock investment in the company before you are asked to participate?

Which option best reflects what you would do, given the researcher's stock investment in the drug company?How important is it for you to know about the researcher's stock investment in the company before you consent to be in this study?

  • Extremely important.
  • Very important
  • Somewhat important
  • Not very important
  • Not at all important

Do you think that the researcher should be required to tell you about his stock investment in the company before you are asked to participate?

  • Yes
  • No

Which option best reflects what you would do, given the researcher's stock investment in the drug company?

  • I would not participate in this study.
  • I'm not sure
  • I would still consider participating in this study

First, a little background:

The scenario you read and the questions you just answered were similar to ones that were asked to participants who have actually been diagnosed with depression. Also, individuals with coronary heart disease and breast cancer were given scenarios in which the researcher was said to be studying drugs that treated these health conditions. In the actual study, participants read seven scenarios, each having to do with a researcher's or university's personal financial investment in the drug being investigated. For instance, other scenarios included the university medical centre owning stocks of the drug company, the researcher receiving a lump sum of money per person enrolled in the study, and the drug company paying for the study.

Why were those questions important to ask?

Much of clinical research depends on patient volunteers to serve as research subjects. Patients must rely on the trustworthiness of the researchers who recruit them to help them decide whether to enroll in the study. This is especially true since benefit from participation can be uncertain. If an investigator or institution does not disclose that they have personal financial connections to the drug being studied, this could potentially undermine the trust of the participants. At the time that this study was submitted, there were no federal requirements on investigators or their institutions to disclose such financial conflicts of interest to potential research participants. This may continue to be the case in the future.

What can we say based on this study?

This study found two important trends: (1) Most potential research participants desired to be informed (and believed this should be required) regarding financial conflicts of interest in research, and yet (2) most still wanted to participate in such research. A clear majority still wanted to participate even in the most controversial scenario, which was the one you read on the previous screen. From these findings, then, it seems that the current practice of non-disclosure of financial conflicts of interest do not conform to the values and wishes of potential patient volunteers. It is not clear, however, whether disclosure, management, or elimination of financial conflicts of interest is the best solution. This study should not be taken to mean that only disclosure is required.

For more information see:

SYH Kim, RW Millard, P Nisbet, C Cox, ED Caine. Potential Research Participant's Views Regarding Researcher and Institutional Financial Conflicts of Interest. Journal of Medical Ethics, 30. 73-79. 2004.

Fraukje Mevissen, PhD

Alumni

Fraukje Mevissen is an Assistant Professor in Applied Psychology at Maastricht University, Dept. of Work and Social Psychology. Dr. Mevissen was a Visiting Scholar at CBSSM from January-July 2014. For her PhD, she studied risk communication and risk perception regarding sexually transmitted infections among young adults at the department of Health Education and Promotion. She then continued as a postdoc researcher at the W&SP department, focusing on development and evaluation of behavioral/health interventions.

Last Name: 
Mevissen
Wed, May 28, 2014

A recent study led by Dr. Sarah Hawley has found that most women who get a double mastectomy to prevent breast cancer don’t need to do it, and are often motivated by fear. Her study has been receiving national press and has been featured in NBC News, CBS News, the Chicago Tribune, MSN, and many, many other venues. Reshma Jagsi and several others were co-authors on this study.

Funded by Robert Wood Johnson Foundation

Funding Years: 2013 - 2014.

Patients and the public are being inundated with a flood of health data and being asked to take a greater role in applying this data to make medical decisions regarding their own health. While general guidelines exist for "best practices" in medical risk communication, this work has not always considered the specific communication goals of the risk message or the specific information or practical needs of the patient. The Communicating Health and Risk Messages (CHARM) project will address the gap in our current knowledge by informing the design of health risk data visualizations across the full spectrum of risk communication goals.

PI(s): Victor Strecher

Co-I(s): Lawrence An, Angela Fagerlin, Kenneth Resnicow, Brian Zikmund-Fisher

Funded by Robert Wood Johnson Foundation

Funding Years: 2013-2014

Patients and the public are being inundated with a flood of health data and being asked to take a greater role in applying this data to make medical decisions regarding their own health. While general guidelines exist for "best practices" in medical risk communication, this work has not always considered the specific communication goals of the risk message or the specific information or practical needs of the patient. The  Communicating Health and Risk Messages (CHARM) project will address the gap in our current knowledge by informing the design of health risk data visualizations  across the full spectrum of risk communication goals.

PI(s): Vic Strecher, PhD, MPH

Co-I(s): Lawrence An, Angela Fagerlin, Kenneth Resnicow, Brian Zikmund-Fisher

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