Are social media savvy patients the best-kept clinical trial recruiting secret?
Patient advocates as the voice for clinical trials
Patients know how to appeal to other patients. We know what concerns about enrollment are, because we’ve had them. We know the barriers to enrolling, because we’ve faced them. Perhaps most importantly, we know what myths about clinical trials still exist, and can work from the inside out to get rid of them. These myths – that clinical trials are a last resort, that they’re not safe, or that they’re only for certain age groups – are preventing patients from receiving the most forward-thinking treatment available. Patients have a personal incentive to recruit patients to join clinical trials. The more patients who join clinical trials, the potentially faster that drug might come to market as a treatment option for their community. Thus, patients just might be the best-kept clinical trial-recruiting secret.
Cancer communities: forces to be reckoned with
Cancer communities are forces to be reckoned with, both on social media and offline. Our respective tweet chats, local meet-ups, poster presentations at international conferences about patient reported outcomes, and at times even our own research studies speak to the credibility of our community reach and knowledge.
On Twitter, for example, the #BCSM (Breast Cancer Social Media), #BTSM (Brain Tumor Social Media), and #LCSM (Lung Cancer Social Media) communities share hundreds, if not thousands of tweets and articles related to cancer care each day. Searching through these hashtags turns up journal articles, recent press headlines, organized chats, personal questions and experiences.
Each respective cancer community has their own community leaders. These leaders often disseminate critical information to their communities and hold a great deal of credibility. However, even though community leaders have their fingers on the pulse of the latest developments in science, and are well informed about how to become more involved in research projects when given the chance, it seems that often the least likely information to be shared within communities is mention of opportunities to participate in clinical trials.
Why is that? Why is it that the category of information most closely linked to saving lives is the least shared within our communities? Is this because we don’t know that these opportunities exist, or because those of us with the most information at our disposal can do a better job of sharing what we know? Pervasive myths about clinical trials remain, but they shouldn’t stop those of us who know better from stepping up to disseminate the information we know needs to be shared. It’s in patients’ best interest to recruit patients, and it is in researchers’ best interests to aid in that process. Additionally, how might researchers conducting clinical trials connect with patient advocates within these communities to help spread information about the trials’ existence? It’s as simple as a tweet, really.
Leveraging social media influence on Twitter for clinical trial enrollment
At first, it might seem like a big responsibility for patients to share clinical trial information amongst their communities. But, with everything else that we share each week, it really isn’t. We can take fifteen minutes, do some digging, and locate a clinical trial to add into the social media sharing rotation. Even if there’s just one clinical trial that we’re really excited about, we can share that same trial every week, or even more often if we feel so inclined. This isn’t just for patients – researchers can do the same. This will help to share information amongst patients, as well as providers on Twitter, in order to help increase clinical trial enrollment. Researchers on social media can learn from the patient example, and reach out to patient communities they see interacting within the aforementioned hashtags.
Searching for a clinical trial used to only be possible by patients Googling for answers or their physician presenting options in the clinic. Now, patients are flipping the script and searching through Twitter to find information from each other.
— Melanie Medina (@melaniemedina) July 1, 2016
By sharing the information and opportunities we come across, more patients will have the chance to enroll in clinical trials.
— Charlie Blotner (@CBlotner_) September 28, 2016
Patients sharing information about clinical trials within our respective communities is imperative. Researchers following our lead on social media is a must. The best part is, Twitter is just one way to do it. Facebook, Instagram, Snapchat, and email listservs all have the potential to be just as effective.
Now that you’ve read this post, I challenge you to go share information about a clinical trial with your social networks!