Patient Recruitment & The Danger of Social Media Cheerleading

Blue Chip Patient Recruitment recently released a white paper on social media and patient recruitment, which describes patient attitudes and best practices in the social media recruitment space.

If you aren’t particularly knowledgeable about social media, the report is a good concise introduction to the topic as it relates to clinical trials recruitment. Though I didn’t find anything surprising in the report, it did prompt some thoughts.

Patient Attitudes on Social Media

Despite industry excitement over social media as a patient recruitment tool, the data indicate that patients are just not that into receiving clinical trials messages via social media.

Fewer than 20% of E-Patients were most comfortable receiving clinical trial messages via Facebook wall or Twitter profile.

This finding is specific to e-patients, who according to the report, are 60% more likely than the general population to have participated in clinical research. Since e-patients are particularly empowered healthcare consumers, presumably your average Internet user will be even less interested in clinical trials messages via social media.

Blue Chip’s finding is consistent with other studies on social media and online health information seeking. For example, Pew Internet’s 2011 report, The Social Life of Health Information, found that only 15% of Internet users got health information via social media. Certainly, this statistic would be far lower for clinical trials information seeking, which comprises a small proportion of overall health information seeking.

At the current time, a small minority of patients are comfortable receiving clinical trials messages via social media. Even if you attempt to engage this minority, other risks lurk. And I’m not even talking about the regulatory constraints of social media that are so widely-discussed.

Understand the Risk (It’s Not Just Regulatory)

The Blue Chip report rightly points out that spamming people with clinical trials messaging is not the way to win friends and influence people. At the very least, you need to be helpful to the community and provide useful, relevant content.

Engagement with a community is one step, but I would take Blue Chip’s advice a step further. Any clinical trials representative participating in an online community must have an extremely nuanced understanding of the culture within that community and the bounds of appropriateness. Failure to have this understanding will likely result in communication that is simply inappropriate and “creepy.”

As an example, consider a recent blog post describing a PR representative’s “creepy” invasion of a patient social media space. The post describes how an administrator of a disease-related Facebook page, Marilyn Mann, was contacted by a PR representative about an investigational drug. Mann was not receptive:

I think it was creepy for this PR woman to join the Facebook page, lurking there and observing on behalf of her drug company client. The idea of having a drug company planting human interest stories in the press is yucky….a big corporation pulling strings behind the scenes. I’m not interested in being used in that way.

Given the circumstances described in the article, I think Mann’s feelings are completely understandable. Social media spaces are sacred spaces to many users, so they must be approached with the utmost respect and mindfulness, particularly with regard to pharma.

Patient awareness of clinical trials remains a barrier to participation. Given limited patient exposure to clinical trials information, both patients and the clinical research industry lose when that limited exposure is inappropriate.

It’s imperative that any patient recruitment representative entering a social media space have a nuanced understanding of the culture of that space and the bounds of appropriateness . Otherwise that interaction risks being inappropriate, thus creating more harm than help.

Cutting a Steak With a Fork

Social media has much potential within the clinical research industry. It’s an excellent tool for researching study feasibility. It can be used for business development by clinical trials companies. It can help you facilitate relationships with colleagues and create opportunities for collaboration.

And I’d argue that social media’s great (untapped) potential is in improving clinical trials awareness, which I consider to be distinct from study-specific patient recruitment campaigns. But tapping that potential would require a complete shift away from the short-term “launch and leave” messaging approach being currently employed by the clinical research industry.

Despite social media’s potential in the clinical research industry, significant impediments remain in the patient recruitment realm, a couple of which are discussed above. Due to these challenges, social media is not likely to be a significant driver of study-specific recruitment in the near future. For a more comprehensive discussion of these challenges, see this previous post:

Patient Recruitment: 3 Big Challenges of Social Media

If you have the budget and/or resources for an integrated marketing approach to patient recruitment, by all means include social media in your campaign. In some cases, social media is a great complement to existing patient recruitment campaigns. But if you are on a limited budget and patient recruitment is your primary marketing goal, social media should not be your recruitment mechanism of choice. Certainly, exceptions exist in a small minority of instances.

Can you recruit some patients via social media? Absolutely. I’ve also successfully cut a steak with a fork. But it would have been much better to have a steak knife. Tools are only as good as the appropriateness of their application.

Despite the buzz over social media, the fact remains that other patient recruitment avenues are generally more promising. Paid online ads, for instance, do not carry the same challenges and risks of social media, and they have the ability to drive far more study interest. Furthermore, social media users are still accessible via paid ads on social media platforms.

The Danger of Social Media Cheerleading

The data indicate that social media has limited upside for patient recruitment. And as illustrated by the “creepy” pharma invasion story, social media recruitment is certainly not without risk.

Despite the challenges, the vast majority of articles on the subject seem to be overwhelmingly positive. In fact, many of the articles about Blue Chip’s white paper had headlines alluding to the promise of social media, which belies much of the content of the white paper.

Among other challenges, the vast majority of e-patients are not interested in getting clinical trials information in their social media feeds. This lack of receptiveness is just one of several impediments described in the white paper. “Promising” is not a word I would use to describe the findings, yet several articles about it use exactly this word.

(To be clear, this criticism is not directed at Blue Chip, who published a good white paper. It’s directed at the often uncritical coverage of social media patient recruitment.)

My concern is that the abundance of social media cheerleading is not being met with an appropriate level of critical thought. I worry that clinical research professionals will jump into social media for patient recruitment without a full understanding of the issues involved. And without adequate understanding of social media, clinical research professionals risk unrealistic expectations, wasted recruitment budget, frustration, or worse.

Am I playing devil’s advocate? Maybe. But I think pragmatist is a more fitting characterization. I am a huge proponent of social media. It has helped me meet and interact with amazing people, both in my personal and professional life. But like any medium, social media has strengths and limitations, and it’s imperative that an understanding of these strengths and limitations guide its use.

If you find yourself in a position where a colleague is advocating social media without articulating potential limitations or risks, be wary. Ignorance of these limitations and risks does not make them any less real.

It’s time to move away from social media cheerleading and get down to the who, what, when, where, why (or why not), and how of social media use in the clinical research industry. These discussions are needed in order for clinical research professionals to navigate social media efficiently and effectively. Blue Chip’s white paper was a step in the right direction, and I hope to see others follow suit.

Thoughts? Please share them in the comments below.