Social Media for recruiting clinical trial subjects – an Irish experience

Successful patient enrolment is fundamental to clinical trial conduct. High patient enrolment (and retention) shortens clinical trial duration and provides security about the time from study initiation to closeout.

Facebook is the dominant social media platform in Ireland, withover 2 million accounts and rising. Almost half of Irish Facebook users areaged 18-34 with fewer older users (13% are 45-65). Although numbers of older users are growing, if Facebook is to beused in identifying and recruiting potential clinical trial participants, the demographics of users needs to be considered. Facebook may be better suited to trials requiring a younger demographic, while studies requiring participants with a range of ages should bear in mind their unequal representation on Facebook.

Some studies have assessed the suitability of social media as a recruitment platform. People avoid using social networking sites to talk about health, political, religious or financial matters as they believe them too personal to approach using social networking (Morris, 2010 <http://research.microsoft.com/pubs/154559/chi10-social.pdf>). Online forums for recruitment can offer an excellent ‘direct to patient’ channel but only when consumers are open about their preferences or personal profiles; furthermore, recruiting older populations via social networking sites is challenging, particularly, since the upper age limit for targeted advertising on Facebook 64 (Connor, 2010 <http://www.pharmavoice.com/content/industryevents/transcriptAcurian_Connor2.html>).

At the other end of the age scale, younger social network users in particular may not post accurate information about themselves, either to match the expectations of those around them, or for privacy reasons (Boyd 2011 <http://papers.ssrn.com/sol3/papers.cfm?abstract_id=1925128>).

Such users have become more aware of both who sees their activity, as well as what they see. Anonymity is therefore crucial to the success of any use of social media for clinical trial recruitment.

Going beyond the traditional forms of social media, patient online forumsfor various conditions may be useful in alerting potential subjects about clinical trials. Here, many users have their own usernames which do not directly identify the individual. As a result, potential participants feelfree to interact with expert guests secure in the fact that they need not identify themselves unless they chose to do so. Threads on popular Irish forums such as boards.ie indicate that internet users are willing to interact with sites/threads about medical conditions –including potentially embarrassing ones – providing they remain anonymous.

Contacting forumadministrators for permission to post a trial advertisement in the forum’s ‘health section’ could be an easy way to engage and recruit potential trial participants without threatening their anonymity.

A study by Blue Chip Patient Recruitment observed that 81% of online patients were interested in participating in clinical trials but only 16% had done so. The discrepancy is due to lack of communication between potential participants and the companies – only 30% of respondents were aware that such trials were available at all.<http://www.pharmatimes.com/article/11-07-28/Social_networking_an_untapped_source_of_clinical_trial_patients.aspx>

At Java Clinical Research, we propose that for recruitment, social media such as Facebook is used only to inform users about clinical trials and as a first interface with the company. Links from social media to a webpage dedicated to trial recruitment allow users to engage with information on the condition and the recruitment process without the risk of revealing it to their social network. This makes use of the reach of social media without risking the privacy of potential trial subjects.