What a time to be alive! Never in history has so much information been at the fingertips of so many. In the developed world, we are privileged to have near-instant electronic access to the accumulated knowledge of humankind, including up-to-the-minute scientific understanding. Concurrent with this ready availability of data, patients have been encouraged and empowered to advocate for themselves by searching for medical content online that is pertinent to their own conditions. However, it is also true that “Dr. Google” does not supplant the significance and rigor of medical training, so there is real value in enabling dialogue within the healthcare community, both broadly and on an individual scale.
Social media comprise resources by which engaged patients can virtually connect with one another and their providers. In our recent review article published in the Seminars of Oncology (http://www.ncbi.nlm.nih.gov/pubmed/26433557) Dr. Adam Dicker (@APDicker) and I (@marklewismd) detail the evolution of electronic communication within cancer medicine from email and listservs to the modern social networks. We highlight the advantages and pitfalls of each platform.
Email is ubiquitous but asynchronous, meaning that there can be considerable time elapsed between a message’s composition and its receipt, creating a potentially hazardous delay if the patient is sending time-sensitive information to their physician about their health. Furthermore, the phenomenon of ‘email metastasis’ (a loaded term in the oncology world!) connotes that email volumes can quickly grow to become untenable, and, for a supposedly free medium, carry hidden costs in terms of productivity. There is additional concern that email exchanges are not always secure enough to meet the strict medico-legal standards for patient-doctor confidentiality. Finally, and almost by design, the content of an email message is often deliberately tailored to a single person, which limits its generalizability and makes email less than ideal for sharing insights applicable to multiple patients.
In order to disseminate information more widely via email, listservs have been used wherein many recipients automatically receive the same message. The collective nature of the distribution list fosters a sense of community but also means that not every message will have equal (or perhaps any!) relevance to each subscriber. While listservs do require some level of administration and content management to ensure that the tenor of dialogue remains appropriate, not all information exchanged is necessarily vetted or validated by a healthcare professional. That said, listservs may have provided a crucial evolutionary stepping stone to the modern social networks.
Contemporary platforms of note include Twitter and Facebook, both massive communities in which users can regulate their degree of contact with one another. Registered Twitter users can curate a stream of Tweets – concise, 140-character ‘microblogs’ – delivered to their own account by choosing other users whose posts they wish to receive, including those of healthcare professionals. A Twitter ‘follower’ can either receive this content passively or react to it. Unregistered users can read Tweets, which by default are publicly visible, but they cannot participate in a comment thread or re-broadcast (‘re-Tweet’) a post. Tagging a Tweet with a pound sign (#) creates a searchable keyword (‘hashtag’) by which all other Twitter users can locate content of interest to them, but the lack of specificity can lead to undesired results, e.g. searching for #Cancer could return Tweets about both the disease and the astrological sign, whereas #bcsm is a more targeted way of signaling a post relevant to breast cancer social media. Both hashtags and re-Tweets are powerful ways for a user to amplify a message such that it can reach a wider audience beyond the followers of the initial author. Since the length of each message is purposefully brief, Tweets can be very conversational, exchanged in a call-and-response style, and/or direct users through hyperlinks to more substantive online resources, e.g. a website describing a clinical trial.
Facebook is the largest social network at the time of this writing, with over 1 billion users globally connecting with one another through the declaration of ‘friendships’ (to the point that ‘friending’ has become a verb!). However, the very notion of ‘friending’ as central to interaction within the network has created concern that a patient-physician relationship on Facebook can stray beyond the strictly businesslike, such that “there is no longer a professional remove between clinicians and [those under their care].” As such, groups can be created on Facebook to discuss a given subject, uniting users around a shared interest, e.g. breast cancer. These groups can be extremely vibrant and inclusive of both patients and providers, depending on the privacy settings and members admitted by the founding user(s). Group members can then exchange information without ‘friending’ one another directly, which may circumvent the above concerns about propriety.
Overall, the current state of social media in oncology allows doctors and other medical professionals to share their wisdom and counteract the proliferation of unvalidated information online while maintaining patient-centricity. We envision a future in which these tools are used by patients to self-actualize improvements in their own individual health and to advance the standard of care by contributing their input on clinical trial design, execution, and accrual. The only way forward in oncology is together.
Dr. Mark A. Lewis is an assistant professor in general & gastrointestinal medical oncology at the MD Anderson Cancer Center in Houston, Texas. He is double-boarded in hematology/oncology after completing a fellowship at the Mayo Clinic in Rochester, Minnesota, where he was chief fellow in that training program. He has a passionate interest in patient-doctor communication, including online dialogue, and moderates a Facebook group for patients with multiple endocrine neoplasia, a rare tumor syndrome that personally affects him and his son. He is also active on Twitter as @marklewismd. He is co-chair of the Social Media Working Group for SWOG, one of the nation’s largest cancer research cooperative groups, and co-chairs their Adolescent & Young Adult Cancer committee as well.