Aside from social media’s use as a research and feasibility tool, significant challenges remain with regard to protocol-specific clinical trials recruitment. I’m of the opinion that other technology trends will have a greater impact on patient recruitment as a whole, namely mobile use in the short-term and widespread EHR adoption in the long-term (but that’s a post for another day).
Despite the significant challenges of social media for patient recruitment, a social media strategy can work well for recruitment in a particular set of circumstances. However, identification of these key variables is crucial to avoiding exposure to a number of dangers, including frustration, wasted recruitment budget, or worse. Like any tool, social media is only as useful as the appropriateness of its application.
To determine the appropriateness of social media’s application in patient recruitment, we need to explicitly identify its limits and engage in discussion about factors critical for success. Unfortunately, such discussion has been rare in the clinical trials industry. For the most part, those using social media for patient recruitment have not detailed their successes and failures, limiting our ability to learn from those experiences.
Mayo Clinic and Scads of SCADs Patients
Thankfully, Mayo recently published a paper kindly sharing its experience using social media for patient recruitment. Mayo used social media to recruit all 12 subjects for a spontaneous coronary artery dissection (SCAD) study within one week, an impressive fact that should garner close attention from anyone interested in this topic.
(I’d also be remiss if I didn’t point out that a co-author of this paper was Dr. Tweet. By all means take a moment to bask in the awesomeness of that fact.)
Plenty has been written describing Mayo’s success, and I won’t bother to duplicate those articles. If you want background on the story, read Mayo’s account of its experience here or watch the video below.
The 6 Key Patient Recruitment Factors
If you have followed Mayo’s very successful social media efforts, you know that the staff behind these efforts have a deep appreciation for the nuances of social media. So it should be no surprise that this social media experiment was not undertaken haphazardly. While reading the Mayo Clinic Proceedings paper, it was clear to me that social media was used for this particular study because of an overwhelming sense that this was the right opportunity.
Though I don’t list Mayo’s social media skill as a factor of success, it most certainly was. This skill undoubtedly allowed Mayo to identify the right opportunity and implement it appropriately. Before you embark on a patient recruitment journey in social media, be sure that the person spearheading that effort is similarly equipped, as well as motivated by more than a desire to sell you on a social media service.
With that said, I’ve identified 6 key factors contributing to Mayo’s success, which should provide a starting point for clinical research professionals who want to hone in on the right circumstances for social media recruitment.
1. Research Focusing on a Rare Disease
Mayo’s objective was “to develop and assess the feasibility of a novel method for identification, recruitment, and retrospective and prospective evaluation of patients with rare conditions.” In this particular case, the rare condition was spontaneous coronary artery dissection (SCAD), a rare cause of myocardial infarction.
…to our knowledge only 1 SCAD registry has been developed and no data from multi-center clinical trials are available to guide treatment. Because of the paucity of clinical data and inconsistent follow-up and reporting, the prevalence, recurrence rate, and long-term prognosis after SCAD remain uncertain, and the underlying etiology and optimal short- and long-term management are ambiguous.
In short, SCAD is poorly understood. As with other rare diseases, this lack of understanding contributes to feelings of frustration, fear, and helplessness among patients. And also like other rare disease patients, SCAD patients are extremely motivated to lessen the uncertainty associated with their disease.
Rare disease patients have difficulty getting answers from their health professionals and they often lack emotional support in their communities. For this reason, rare disease patients have turned to the Internet to fill this void and find answers, thus becoming “power users of health information online.”
In my opinion, SCAD’s status as a rare disease was the single biggest contributing factor to Mayo’s success in recruiting patients via social media. Social media should certainly be considered as a recruitment possibility for other rare diseases as well.
The next 2 factors I’ll discuss are strongly intertwined with SCAD’s status as a rare disease, but they both merit individual discussion.
2. A Concentrated and Organized Patient Population
Inspire, a patient-focused medical community, has a heart disease group for patients to share information. Within this heart disease community, women with SCAD formed an informal subgroup with contributions from approximately 70 women. Notably, this membership is almost double the size of the largest reported case series of SCAD.
In other words, the SCAD subgroup of the Inspire website had the largest and most organized concentration of SCAD patients accessible to Mayo. Inspire provided the venue, but patients had self-organized and essentially staked out their space in this particular corner of the Internet. By “plugging in” to the existing organization of this Inspire subgroup, Mayo was able to quickly and easily identify participants.
In fact, this particular subgroup was so organized and engaged that patient recruitment was essentially completed with one message board post.
Our study harnessed the “natural” communication among the group to notify participants of the planned study via an internet post by a single member. Active recruitment was unnecessary…
Before embarking on a patient recruitment journey with social media, determine if patients have already self-organized into concentrated Internet pockets. The more organized your patients, the easier your task will be. Rare disease patients, in particular, have a tendency to organize into concentrated Internet groups, but certainly you will find this characteristic with other diseases as well.
But you must proceed cautiously in patient communities. Also remember that the more organized your patients, the more detrimental a misstep is likely to be. Take the time to understand the nuances of the community as well as the limits of appropriateness within that community before you even think about communicating with patients.
3. Patient-Initiated Research and Ownership for Success
Because these SCAD patients were very motivated, they had developed extremely sophisticated research questions.
Many organized advocacy groups have developed research agendas. However, our highly engaged and committed study participants, linked only via the Internet, demonstrated levels of sophistication and specificity in their patient-initiated research questions that were on par with those developed by formally organized groups.
In an effort to pursue study of these research questions, a member of the SCAD subgroup contacted an author of the paper to advocate for further SCAD research. In short, this research was entirely patient-initiated.
Because the research was patient-initiated, patients had ownership of the research long before Mayo set a patient recruitment strategy in motion. The patient community’s feeling that this was their research undoubtedly spurred the SCAD community to ensure the research’s success.
Though it’s not always possible for research to be entirely patient-initiated, clinical research professionals should consider ways to provide research participants with some ownership of the clinical research process.
4. Favorable Demographics for Patient Recruitment via Social Media
According to Mayo’s paper, SCAD has an approximate 2:1 female predominance. In addition, SCAD tends to effect pre-menopausal women.
Online Health Information Seeking
Pew Research’s 2011 study of online health information seeking found women and younger audiences to be particularly enthusiastic consumers of online health information.
Social Media Use
In a separate study on social media use, younger women were also found to be particularly avid users of social networks.
A Perfect Demographic Storm
Because younger women dominate both online health information seeking and social media use, they are more amenable to receiving clinical trials information via social media. Since SCAD overwhelmingly affects younger women, Mayo’s study of SCAD patients was a perfect demographic storm of social media recruitment potential.
Before recruiting participants via social media, you must understand the demographics (and other characteristics) of your patient population and how these demographics will impact patient receptiveness to the medium.
5. Widespread Positive Brand Awareness
As I wrote part of this post, a Facebook scam claimed that 50 free iPads were being made available in memory of Steve Jobs. Approximately 15,000 Facebook users clicked on the link before it was reported as malware and disabled. This example is just one of many scams that take place daily on social media sites.
Rightly, consumers are wary of information they receive via social media, particularly as it relates to something important like health. Mayo’s widespread brand awareness and positive reputation undoubtedly eased patient fears and encouraged trust.
In fact, the authors reported that 3 potential participants, or 25% of their study patient population, were concerned enough about the legitimacy of the study to have their doctors contact Mayo directly. Apparently, news of the study went viral before Mayo could add information about it to their clinical trials website. Because the study did not appear on Mayo’s website, some patients became concerned.
…3 potential study participants contacted an investigator at the patients’ request to ensure that our study was ‘legitimate.’ Given the possibility of Internet scams and the fact that the patients had not yet received communication from the Mayo Clinic study team, this reflects appropriate caution. In future studies, posting key information available on Mayo Clinic’s Web site for institutional clinical trials before the notice goes ‘viral’ on the patients’ social networking site will be important.
Understandably, patients wanted to confirm Mayo’s sponsorship of the study, thus also confirming the study’s legitimacy. This example illustrates that Mayo’s reputation certainly impacted patient receptiveness to study participation.
That’s not to say you need to be Mayo Clinic to recruit study participants via social media. However, you do need to earn patient trust. Any online patient recruitment campaign, particularly with regard to social media, should give patients indicators that the research is legitimate.
6. Lack of Geographic Constraints
To participate in the study, SCAD patients had to submit medical records and complete questionnaires. Since participants were not required to visit a research facility, they could be recruited from anywhere.
Unlike online advertising appearing on search or social websites, social media campaigns are difficult to target geographically. In Mayo’s case, this limitation of social media was not a problem because the study did not have any geographic constraints.
If your study requires that patients visit particular research sites, you need to consider how the geographic location of your facilities aligns with the geographic profile of the social media users you are targeting.
Variables Well-Aligned for Social Media Success
Due to the key factors I’ve described, Mayo Clinic was able to overcome the challenges inherent to social media patient recruitment. In some cases, clinical research professionals can mimic the factors contributing to Mayo’s success. But in most cases, the possibility for successful social media recruitment will largely be the result of static factors like therapeutic indication, patient population, study design, and geography.
Before undertaking a social media campaign for patient recruitment, it’s imperative that clinical research professionals identify pertinent variables and determine whether those variables are well-aligned with a social media recruitment campaign.
The reality is that, in many cases, patient recruitment via social media will be an uphill battle. But all is not lost. You can still recruit patients who frequent social media sites with advertising on those sites, eliminating the challenges of patient recruitment on social media websites.
Have I missed factors that likely contributed to Mayo’s success? What other factors do you think could have a positive or negative impact on a recruitment campaign using social media? Please share your thoughts below.