Social Media for Clinical Trial Enrollment
Members of The Blue Ribbon Panel for The National Cancer Moonshot Initiative have outlined ten topics and areas of improvement needed in order to make Cancer Moonshot a reality. The first of which is to establish a network for direct patient involvement. The purpose of this network is to “Engage patients to contribute their comprehensive tumor profile data to expand knowledge about what therapies work, in whom, and in which types of cancer.” Patients are the most engaged members of their own care. They live and breathe their own medical care through attending appointments, taking medication, and experiencing symptoms and side effects every day. The more important question is then, how do we make information accessible to patients and caregivers. My answer: harnessing the power of social media.
Tweet for a Trial?
Social media is home to health care stakeholders all over the world. They log into Facebook, Twitter, Snapchat, and Instagram from their phones or personal computers everyday and share information that they’ve learned with the rest of the world, just like anybody else. But, while their main target audience might be other providers, oftentimes they find themselves inadvertently interacting with patients, too. I have watched a neuro-oncologist deliver the highlights of conference experiences via Snapchat, and medical students post about what they learned in their lab that day on Instagram, both of which times I learned things I would not have elsewhere. Most recently, though, I stumbled upon live-tweets coming out of a conference (The 13th annual Asian Society for Neuro-Oncology Meeting) taking place on the other side of the world. I would not have known that this conference was taking place if I hadn’t caught a tweet in my stream mentioning a mutation I have an interest in. From there I found my way to the conference hashtag, and from there I discovered hundreds of other tweets with research updates from attendees. What these tweets lacked, though, were the hashtag that patients use to track brain tumor related information on Twitter – #BTSM (Brain Tumor Social Media). In order to engage patients in research and expand our knowledge about what therapies work, in whom, and in which types of cancer, we need to be allowed into the conversation. Our “volunteer army” of patients as desired by the Blue Ribbon Panel’s call to action, use that hashtag every day. But without content from conferences providers are attending, trials that are producing data, and recruitment information, we have no way of knowing what information is out there. The community leaders who keep an eye on these hashtags spread information about research and other opportunities for patients to participate in as well, making social media a worthwhile investment.
There are community leaders leading chats on Twitter, and organizations rallying patient voices from coast to coast online. These patient leaders and organizations are the key to getting patients to enroll in clinical trials, because these are the people who have the trust of patients. Clinical trials are a new idea and foreign concept to many patients, making trust something that needs to be earned, and not a given when it comes to recruiting patients for trials. With the guidance of someone else within their community who has already participated in a trial, is currently enrolled in, or can connect them with resources relating to that clinical trial, patients are able to feel an added sense of support. Mutual respect, trust, and support from clinicians comes in the shape of referrals from other patients. That’s how I found my surgeon, and that’s how so many other patients choose who to add to their medical team as well. We need to meet patients where they’re at, and not all patients want to enroll in clinical trials for the same reason.
Regardless of why patients want to enroll, we still want them to enroll. The Blue Ribbon Panel recommends creating a network for direct patient engagement where patients can pre-register to get enrollments up. You’ve heard my recommendations. What are your recommendations for how to establish a network for, and increase direct patient involvement in clinical trials?
|Charlie Blotner is a senior undergraduate student in Family & Human Development at Arizona State University. Charlie has a passion for increasing clinical trial participation, and wants to empower patients to make the most informed medical decisions for themselves possible with the most research information possible. Charlie has spoken at Stanford Medicine X and believes in the power of patient storytelling. As a brain tumor survivor and patient advocate, Charlie co-moderates Brain Tumor Social Media (#BTSM) Chats on Twitter. More than anything, Charlie wants to be able to contribute to the work that helps patients to be able to breathe easier.|