Recently, I was astonished by the conversation taking place at a Massachusetts Biotechnology Council (MBC) Forum on the topic of using social media to encourage open dialogues with patients and patient advocacy groups. Social media has become an effective method for patients to connect with one another and also to key opinion leaders and experts in the field. One of the panel members was a cystic fibrosis (CF) patient and an advocacy leader who talked about how social media has allowed him and other CF patients to meet on a virtual level and communicate routinely with one another about living with their disease, providing mutual support, and sharing their challenges and successes with one another. Many of these CF patients are prohibited from meeting face to face due to the potential of spreading infection. This was something that really hit home with me on why so many patients are relying on social media to be their voice, both individually and collectively. Not having a rare disease, I was humbled to realize the fact that social media isn’t all about the latest Kardashian scandal or “liking” your grammar school friend’s summer vacation photo.
One of the major influences of social media in the patient community is in the area of clinical trials. Social media has become an effective method by which patients can bond together to influence and improve clinical study design, enhance recruitment, and ensure compliance in trials. Social media is a powerful tool which allows patient advocacy groups to collect critical information from a large number of patients in an inexpensive and efficient manner. By doing so, patient advocacy groups can collaborate with drug and medical device companies, which can utilize this data advantageously to aid in the design of more robust and patient centered research studies with the ultimate goal of possibly getting a safe and effective therapy to market faster. Involving patients upfront in the design and planning of clinical studies is critical to ensure a greater opportunity for the success of the study.
However there can be challenges to managing posted information since social media is so transparent and easily accessible to anyone. A point for discussion at the MBC forum involved the posting of clinical trial offerings and results of clinical trials in newsfeeds. Although patients will post updates of new clinical trials or trial results, it still may take months for the patient’s treating physician to become aware of the latest available clinical studies open for enrollment, as well as any clinical study results. If the treating physician is unaware of the latest medical breakthroughs and potential clinical trials available to patients, then how might that affect the patient’s medical treatment plan? Perhaps it is time for patients to start educating the local medical community and guide them to sites such as Twitter and Facebook instead of waiting for the information to be discussed formally at an annual medical conference. Spending a little time on Facebook or Twitter may not be such a bad idea after all.