Bioethics Blogs

Building Better Networks for Health Research

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 addition, these tools are used by participants to learn about their diseases, to find emotional and practical support, to find clinical trials, and even to initiate their own studies. (Moreno, et al.) Social media websites have the potential to support the full spectrum of communication between researchers and the public more efficiently, cheaply, broadly, and deeply.

And yet these new communication tools have not made a significant impact on clinical trial participation. In fact, meeting enrollment timelines is on the decline to such an extent that one study estimates that 80% of trials fail to meet enrollment timelines, and 50% of them enroll one or no patients. (Zamosky) Moreover, only about three percent of cancer patients participate in clinical trials, and seniors represent only about one third of people volunteering for clinical trials, despite the fact that most studies involve drugs targeted at age-related diseases. (Katz, et al.)

As a cancer survivor and a beneficiary of clinical trials that relied on the participation of many thousands of research subjects, these are very disturbing statistics.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.