A few months ago I gave a presentation where I shared best practices for recruiting and engaging with COVID-19 survivors on social media platforms. The audience said they found the topic helpful so I decided to turn the main points from the presentation into a post here.
There are two very important reasons why a researcher should learn how to engage with patients online. First, recruiting research subjects from online health communities enables precision recruitment. There are online health communities for very specific subgroups of patients, such as “mothers with diabetes” or “parents of children with long covid.” While many of us were trained to advertise our studies to help patients find us, I’ve found I can recruit many more participants by finding the places they spend time in online and going to them.
Secondly, engaging with online health communities is an excellent way to learn what patients really care about and need. When I analyzed questions posted by women just diagnosed with breast cancer, I learned that the most common question these women had was how to avoid chemotherapy. Many of these women were seriously considering skipping chemotherapy, but were much more comfortable having this conversation with breast cancer survivors than their doctors. If we want to understand what factors most impact patients’ decisions about their health, we need to connect with patients outside of clinics.
However, it’s also important to acknowledge the potential risks of interacting with patients outside of a typical medical setting. We need to make sure that patients understand why we’re talking to them and how we will use the information we learn. It’s very important that researchers’ messages are never interpretable as medical advice. Most importantly, engaging with patients online must be done professionally and authentically. I’ve designed communication strategies for engaging with online groups for over 14 years, my PhD is in Communication, and yet it’s still essential for me to keeping learning about how engage others in new platforms as they come out. You have to spend a lot of time observing and learning in an online space to find the right formula for being both authentic and professional. Effective communication in the most popular online spaces like TicToc requires an understanding of trends, subculture, and memes. The future of engaging with patients requires that some medical professionals to learn how to immerse themselves in the patients’ world in order to gain a better understanding of their worldview.
To begin developing that skill, let’s start with some basic best practices (BPs) for engaging with online health communities. The engagement techniques you use will vary by community, but here is a list of BPs that will get you started. I’ve pulled these directly from my PowerPoint slides where OC stands for “online community.”