Background/Purpose: Before I became ill in 2017, I was a registered nurse with a degree in health science who’d often educate patients about how they could better live with their disease by understanding it. In my career, I served as a Health Education Coordinator, for the benefit of patients and communities, and was certified in diabetes education. So, when I was diagnosed with relapsing polychondritis (“RP”) in 2018, I began to do my own research.

Unfortunately, RP is a rare disease, and though my rheumatologist was relatively well informed about it, many doctors are unaware of the the case studies and (albeit few) larger population studies. In this vacuum of knowledge, patients often seek out and fall prey to misinformation. For example, one doctor (commonly found on the internet) touts a diet that “cures” RP. While I certainly encourage others to eat healthy and exercise regularly, there can be significant danger in forgoing legitimate medical treatment in order to pursue unproven cures. Likewise, even well-meaning patients often present their own experiences as if they’re proof of the success of a medication or lifestyle change.

Intervention: Troubled by the lack of peer-reviewed science and anecdotal evidence in some other online support groups, I created an online community for RP patients. Along with five other moderators, including two health professionals, we vet the information provided. First and foremost, we ensure that it’s coming from a reputable source, and that it’s accessible to laypeople. I’ll listen to dozens of lectures and comb through pages of results from online archives of biomedical and life science journal literature before I post something to the group.

To provide consistent and practical information, we also do “Monday Meds,” where we discuss the different medications for autoimmune disease, and “Favorite Things Friday,” where we list what we’re grateful for, like pillows with a hole in the center, which helps to relieve the pressure on our ears when sleeping.

However, it’s not just about the quality of the information. Given all of us have spent years interacting with fellow RP patients, we’ve established trust and rapport within the community, allowing us to both highlight reputable sources and to gently discourage misinformation.

Maintenance: Through this group, we’ve been able to equip patients with knowledge to bring to their doctors, empowering them to positively influence their own care. Similarly, we’re able to prevent them from getting their hopes up about untested treatments. We offer an evidence-based, community-minded approach that has improved the quality of life for our members and for me.

Quality of Life: By offering both current scientific research and emotional support, our online group addresses the emotional and health-related needs of our community, which would otherwise go unmet for most of us.

Relapsing Polychondritis: Secular Science and Support Group

Susie Ratledge, Presenting Author

Relapsing Polychondritis Foundation

« Back to ACR Convergence 2021

ACR Meeting Abstracts - https://acrabstracts.org/abstract/fighting-health-related-misinformation-using-social-media-how-creating-an-online-group-for-patients-with-relapsing-polychondritis-and-moderating-it-with-health-professionals/