You are the chairperson of an IRB overseeing a study comparing three diabetes drugs. Some of the study participants have been talking about the study on social media. The investigator believes their posts have affected study enrollment, adherence and retention. How should the investigator deal with study participants who are sharing their study experiences online? Read more
TAG ARCHIVES FOR social media
Imagine this scenario: you are a researcher conducting a clinical trial on a promising treatment for a rare but serious heart condition. Unfortunately, you are struggling to locate and enroll enough eligible participants and your study is at risk of not completing. Then you discover a Facebook support group for precisely the condition you are studying. The group is open: you do not need to be invited or to suffer from the condition to become a member—anyone can join. Here are the eligible participants you have been looking for! Read more
From a study on the lack of racial diversity in clinical research to appeals for improved clinical trial reporting, this week’s Research Ethics Roundup looks at new policy concerns for the research community.
1. Why Social Media Needs to Have a Code of Ethics for Clinical Research: In this opinion piece for CIO Magazine, Eric Swirsky argues that the clinical research community needs to develop detailed research guidelines for research done with social media data. He points out that social media users may not fully [...] Read more
When we interact with colleagues at the 2015 Social, Behavioral, and Educational Research Conference (SBER15), an extremely helpful insight can arrive at any time, and from any source. But it’s difficult to know in advance when we will perceive it, and how it will affect the way we address our own research responsibilities.
For instance, I had no idea that an insight from a morning presentation would affect the way that I approach a challenge that I occasionally face as IRB Chair at Providence College. From time to time, we receive applications for projects in which advance processes of informed consent are not appropriate because they would “tip off” participants and [...] Read more
By Amy Davis, JD, MPH
Social media platforms such as Facebook, Twitter, YouTube, LinkedIn, and others have dramatically exposed new opportunities for conducting research and recruiting subjects. Although the application of these tools to the research enterprise has been cautious, they are used for a variety of purposes. Researchers are conducting observational studies of online behaviors and survey research; informing patient groups of relevant clinical trials; conducting community consultation in anticipation of emergency research (Stephens, et al.); locating subjects lost to follow up; and even designing studies through crowdsourcing public input. (Thompson) In [...] Read more