by Tali Kaplan
It's no secret that more and more people are turning to the internet for health information, earning the moniker "epatients"1. But it's not just patients who are scouring the Internet in search of wellness: over 50% of searches are conducted by friends and family of patients. And these searches have real impact: the Pew Internet & American Life Project said most epatient searches have a direct impact on health. Given both the prevalence of health-related searches, as well as the power of the information generated, online activities in general and social media in particular must be considered in the development of effective Clinical Trial Recruitment (CTR) strategies.
To clarify, however, social media is only one element of an effective CTR program. The ideal state is a panoply of "traditional" (and effective) methods such as advertising, physician referral, and direct patient outreach. In this context of a synergistic approach, all the elements are duly amplified. Let's define what is meant by "social media." A variety of definitions abound, but for our purposes, we mean "communities and conversations": any where two-way communication exists. When it comes to CTR it means we must use technology to:
• Support patients talking about their disease
• Identify influencers who can help inform them
• Syndicate study information so patients can find it readily
• Know which groups, forums and networks matter most
• Develop relationships with top bloggers, social networkers, and forum moderators
• Exploit just-in-time, "sharing" tools such as Facebook and Twitter
Traditional web marketing activities such as banner advertising and patient databases are not new tools in the quest for clinical trial participants, but they remain useful. Still, maximizing these tools requires coupling them with social media outreach to amplify online efforts and target the right patients, saving valuable time and resources. The online CTR model uses a single study website as the beacon of online activity, the hub around which other outreach efforts extend. The site provides IRB-approved information, pre-screening options, study site selection, caregiver resources and a portal for potential investigators to learn more about the trial. As social media activities are layered in, the study website maintains its role as the primary online destination and is a crucial step in connecting with potential study subjects.
Let's review some key activities in social media that can have a positive impact on kicking off the recruitment process.
1. Employ analytics and insight - Learning about the targeted patient population should always be the first step in developing the social media strategy. In addition to communicating about their disease, many patients connect over lifestyle affinities. For example, women with rheumatoid arthritis might meet up in a virtual gardening community. Men with gout might be found in a chat room discussing NASCAR. Seeing patients as people provides an important perspective in reaching them.
2. Tap key influencers - In his 2000 book, The Tipping Point2, author Malcolm Gladwell described three types of people: connectors, mavens, and salesmen. These themes apply to the online world as well, and where such "influencers" are an essential aspect of social media that needs to be embraced. Influencers are well connected to other people, have acquired an expertise through association and experience, and are forthcoming in sharing that knowledge. By reaching out to them, and sharing trial information in a way that is compelling, these influencers have the potential to become study advocates, extending the reach of existing CTR efforts.
3. Harness instant communication tools - Mobile phone apps, Twitter, and Facebook are all examples of channels that are optimal for sharing study information, providing updates, and even espousing retention messages to keep patients engaged in the trial. Many companies already complement their outreach with Facebook -- either as a company-branded page or for specific study protocols. Twitter is the third-most-used social network with 6 million unique monthly visitors and 55 million monthly visits3. Although it is challenging because of the text limitation (140 characters), a key influencer or investigator can be a powerful "tweeter" in getting the word out about the study, with a link back to the study website.
4. Build a unique distribution channel - A "widget" a portable community site, embedded in a web page, contains information to help patients decide if they want to participate in the trial. It has the ability to update content in real-time with minimal effort. Most importantly, it can be downloaded to over 60 web environments, including Facebook, LinkedIn and MySpace.
It is important to remain engaged in these online communities over the long haul, monitoring conversations on blogs and in forums, and quickly stepping in to offer information, correct errors and distinguish your trial from others that might be discussed. Because of the real-time nature of online conversations, rapid response is a key factor in ensuring a continual flow of accurate information. But not every client is prepared to go full-tilt in online CTR, and there are certain baby steps that should be taken to ensure company-readiness. Are there social media guidelines in place? How do you triage adverse events if a study patient reports one online? How will you manage negative feedback about the study? Check with the regulatory affairs and legal departments to ensure compliance with company practices and FDA guidelines on promotional practices. In general, however, transparency and integrity are the watchwords. Social media is only effective if companies are thoughtful and judicious about how it's used. Overtly commercial messaging will backfire. Being a source of legitimate, accurate information is rewarded in the online medium. Social media channels were created as a more authentic way of communicating, so be respectful of the environment and only engage when it's appropriate to do so. Creating a presence online can't happen overnight, and must be part of the larger recruitment strategy. In that scenario, it will prove to be an important component of any CTR program.
1 Pew Internet & American Life Project, 2009
2 The Tipping Point: How Little Things Can Make a Big Difference
3 Kazeniac, Andy (2009-02-09). "Social Networks: Facebook Takes Over Top Spot, Twitter Climbs."
Tali Kaplan is director of San Francisco-based WeissCom Group.