Patient culture will bloom wherever it’s planted. It started on message boards and trickled into Facebook Groups, it spread across twitter and broke through your Instagram feed, it wove it’s way through Reddit threads and has even erupted across TikTok.
Every platform has a purpose, a mission, a community shouting to be heard in 120 characters or less, in impassioned arguments in comment boxes and even through interpretive dances. Patients are the most pervasive species of influencers– not because they want the clout or the clicks– but because their very lives depend on the awareness they spread.
There is so much more that goes into the patient culture on social media than just support groups or complaining about symptoms. Culture can include inspiration, advice, calls to action on a legislative level, personal testimonies, the sharing of breaking news and research, the celebration of survivors and memorializing those who have passed. It can include the discussion and creation of guidelines for how an entire community of patients wants to be represented to the mainstream world. It can spur a collective sense of empowerment that leads patients to demand respect and communication in the exam room and maximum transparency at the pharmacy.
It can be a collection of stories that represents an entire group’s common experiences: the prejudices and injustices they face.
But every platform spins this narrative differently and it’s important to know where to look for the right information and to understand what it is you’re stumbling upon when you get there.
Let’s break down how the four top social media platforms represent patient cultures through their mediums and how you can be a collaborative part of these conversations.