Flip No. 64

Increase Compassionate Care by Listening to Patients and Communities on Social Media

Online narratives are a powerful source of information that shouldn't be ignored

By Beth Toner

In their short encounters with health care professionals, patients rarely get the time to share with clinicians the very real impact that illness and chronic conditions have on their lives. And yet, that narrative information is crucial to providing appropriate, empathic and compassionate care.

Patients are sharing this important information, clinicians just aren’t seeing it. Many patients and their caregivers are active on blogs, Twitter, Facebook, Instagram. And many more find support and peer-to-peer counsel as they evolve through a new diagnosis. When they need to fill a gap in what their care plan provides or what they’d like to accomplish, they’ll crowdsource the problem, finding solutions by building relationships on trust—often with someone they don’t know in real life.

Clinicians—get out there and read those blogs, follow those tweets, and listen. Really listen. These public online conversations are powerful sources of information. While every patient and every situation is unique, a person can learn much more about the true day-to-day struggles of managing illness and health by reading about it in real-time, rather than through the filter of a clinical setting. Better yet, clinicians can bring what they learned online back to the patient encounter. Consider how a clinician asking this question might invite a discussion about what a patient sharing on these other channels and provide a jumping off point for a deeper discussion: “I read a blog by another patient with your condition, and here’s what I learned about what he/she is thinking/feeling. Is that your experience? How is it different?” By meeting patients where they are online, clinicians can better grasp the real-life impact of chronic illness—and in turn, deliver better care.


Clinicians, it starts with you. Are there chronic conditions you see regularly? Go on a social media platform—Twitter is a good place to start—and search the condition's key words (Ex: #CysticFibrosis, #asthma, #COPD). You’ll quickly find Twitter handles of patients living with that condition. When you look at their profiles, you’ll often see they have blogs as well. Keep track of conversations by creating lists of handles around a specific condition. To get started, spend 15 minutes before you start each clinical day by reading through tweets from that list of handles, as well as any related blogs. You’re guaranteed to learn something new—and you'll be inspired for the day ahead. As a resource for social media listening and the observation strategies to use as both a patient and a clinician, please check out the Patient Narrative Handbook.