Using video vignettes to learn about public views about informed consent
Often, many medications are approved for a single medical condition. Think of high blood pressure, for example – one doctor might prescribe one medication while another doctor prefers a different medication. Which is actually the best choice? One way to get closer to a good answer is to study what is taking place in medical settings like doctors’ offices and hospitals. Research on medical practices (ROMP) can happen in “real time,” going on as patients receive usual medical care. However, the usual approach to informed consent required by regulations is complicated to carry out in this setting.
Bioethics center faculty Drs. Benjamin Wilfond, Maureen Kelly and Doug Diekema and staff members Ellen Kuwana and Kathryn Porter are exploring what the public thinks about research on medical practices. The main project questions are:
- What do people think about the risks and benefits of adding research to medical care?
- What is the best approach to letting patients know such research is being conducted?
The ROMP study is looking at the general public’s attitudes toward this research, which can include 1) reviewing medical records of patients whose doctors have prescribed different treatments and 2) randomizing patients to the different treatments. The ROMP team created animated narrative videos to explain these concepts to use in a national population survey conducted in 2014. The team also conducted a survey of institutional review board (IRB) professionals who oversee research to see what they think are the best ways to provide medical care to patients and conduct research with patients’ data.
“Many ethical guidelines are based on assumptions about what is important to people. But when we ask them, people might have concerns that we did not consider. Other times, the problems that we are worrying about are less concerning to them.”
The ROMP team wants to understand more about the impact of the videos and is planning to conduct knowledge and attitude assessments with the general public where the video will be compared to regular text, comics, and a “talking head” video.
For more information, please see the project website at rompethics.org.
Our study aims to help policymakers make recommendations about how to communicate with patients about research on medical practices it in ways that reflect their concerns and priorities.
- Diane Korngiebel, University of Washington
- Cyan James, University of Washington
- Tom Gallagher, University of Washington
- David Magnus, Stanford University
- Mildred Cho, Stanford University
- Sandra Lee, Stanford University
- Melissa Constantine, University of Minnesota
- Radicia Alica, Providence Health System
- Alex Capron, University of Southern California
- Steven Joffe, University of Pennsylvania Perelman School of Medicine
- Nancy Kass, Johns Hopkins University
- Michael Green, Penn State Hershey
- National Center for Advancing Translational Sciences
- Greenwall Foundation