The changing face(book) of medical research

Is it time for the medical research community to friend Facebook? One research group’s experience with the social media tool suggested yes, but an accompanying editorial urged caution.

Shannon W. Stephens, EMT-P, of the emergency medicine department at the University of Alabama School of Medicine in Birmingham, and colleagues described their experience using Facebook to facilitate two Resuscitation Outcomes Consortium (ROC) trials in the July 16 issue of Circulation. Trauma and emergency research such as theirs falls under an Exception From Informed Consent federal regulation, which includes a community consultation and public disclosure (CC/PD) process.

Traditionally, researchers turn to community town hall meetings and random-digit telephone dialing in an effort to address CC/PD, but these are costly and inefficient, Stephens et al pointed out. They instead chose Facebook as a way to reach the public for two trials, one on cardiac arrest and the other on major trauma. For each, they posted Facebook ads targeted by age and location.

The cardiac study ad, posted between Dec. 14, 2011 and Jan. 12, 2012, had 27 displays per target population, with 437 people being redirected to the study website for a cost of $2.29 per visitor. The trauma study ad was posted between Feb. 1 and April 30, 2012. It had 28 displays per target population, with 743 people being redirected to the study website for a cost of $1.35 per visitor.  By contrast, a previous study using traditional CC/PD methods cost $17.24 per person.

The majority of visitors for both the cardiac and trauma trials were women between the ages of 40 to 54 years old. Only 16 percent of the cardiac study viewers and 12 percent of the trauma trial viewers spent a minute or more on the site.

Stephens et al wrote that social media offers an efficient mechanism to reach a large audience, but acknowledged Facebook use was demographically spotty and needed to be augmented with strategies to fill those gaps.

In an editorial, Katherine C. Chretien, MD, of the Veterans Affairs Medical Center in Washington, D.C., noted that the emerging role of social media in research raised concerns and challenges. About 20 percent of the population in the U.S. does not have access to the Internet and of those who do, only half access social media sites.

“Full CC/PD simply cannot occur when certain subpopulations, vulnerable populations who are more likely to require emergency medical services, are not invited to the discussion,” she wrote.

Chretien viewed social media as complementary to traditional CC/PD methods but emphasized ethical and logistical challenges such as privacy, data ownership, informed consent and access. Regulatory agencies have failed to keep pace and provide adequate guidance, she argued.

“[W]e also have a duty as investigators, as IRBs [Institutional Review Boards], as members of the medical profession, to fully inform, even if consent is not the goal. The methods by which we do this need to stand up not only to published regulations, but also to an even higher standard of what is right.”