Communications of the ACM
Clinical Trials Now Using Social Media to Attract Trial Participants
Credit: University of Georgia Libraries
Clinic sites in 13 cities across the U.S. are looking for a total of 1,350 HIV-negative gay men to participate in the latest HIV vaccine study from the HIV Vaccine Trials Network (HVTN). And they're using social media to help reach these individuals where they are, which, these days, is increasingly online.
The HVTN, internationally headquartered at Fred Hutchinson Cancer Research Center in Seattle, WA, is running a series of ads on Facebook, seeking men who are interested in men and who live in or near one of the cities with clinics; and a much edgier and more provocative one placed on online gay hook-up sites to help bring in interested individuals network-wide to a Web site for more information. These online ads integrate with standard media pieces such as transit ads, posters, and giveaways such as condoms, palm cards, yo-yos and coasters.
One site, the Fenway Health Vaccine Studies clinic in Boston, has folded Craigslist into its mix of successful recruitment venues—in addition to community events, in-person outreach at traditional gay venues such as bars, and advertising. Coco Cuizon-Alinsug, one of Fenway's recruiters for HIV vaccine clinical trials, spends hours each week reading personal ads on Craigslist and inviting individuals who appear to fit the target profile to consider participating in a trial. He's become adept at finding and recognizing these individuals, based on the information contained in their ads, especially indicators of specific sexual behaviors. Specifically, as he doesn't have extra time or funding, he responds to those ads that describe risky behavior. Cuizon-Alinsug replies to these personal ads with language approved by Fenway's Institutional Review Board, inviting the advertiser to learn more about HIV vaccine clinical trials at the clinic, with the Web address for the clinic and an email address to reply to. Like street/bar-centered recruiting, it takes a lot of outreach (sometimes to hundreds of people) before one man comes to the clinic for screening.
One man already participating in an HIV vaccine clinical trial is blogging about his experience at the HVTN site at Vanderbilt University Medical Center in Nashville, TN (in the Bible Belt) to those most at risk of being infected by HIV. 'The Accidental Activist' is Andrew Prislovsky's blog about his experience as a participant in the trial. He is blogging—after thinking long and carefully about what it might mean to go so public with his messages—in the hopes of inspiring others in the community to consider participating in a clinical trial, and to help educate the public about the need for a vaccine to prevent HIV infection.
In Birmingham, AL, one participant came 60 miles from Tuscaloosa to be screened to participate in the latest HIV vaccine trial at the University of Alabama, only to find out he's ineligible because he's had a particular cold (and this particular vaccine study needs participants who don't have the antibody to that cold virus in their blood).
Not to be denied his chance to champion the cause, however, Edward Todd took it upon himself to start a Facebook Group to spread the word about the need for trial participants. Over the first two months, he reached almost 1,200 followers—mainly college students—who look to the Facebook page for the latest information about the clinical trial. Six of those followers have already enrolled in the study.
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