The Power of Social Media in Sleep Health

A few years ago, I started the Sleep Better NYC Instagram account without any expectation or guidance. Its creation was inspired just as much by my experience working with hundreds of sleep professionals as it was by my experience chatting with people at the bar. In the clinical setting, I was frequently asked about patient education materials. When I was socializing, friends, family, and people I had never met before would ask questions and share stories about their sleep experiences. Like many of you reading this, I would start to finish their sentences in my head as they were speaking.

So, I started creating content around those experiences and questions. On social media and podcast platforms, patient advocate and writer Emma Cooksey, host of the Sleep Apnea Stories podcast, and Mollie Eastman, the host of The Sleep Is A Skill podcast, stood out as brilliant (and fun) content creators. They were offering realistic and helpful information for adults to improve their health while improving their sleep and advocating for themselves. We followed, liked, and shared our way into a friendship “IRL,” supporting each other to amplify our sleep messages. We believe in educating people about healthy lifestyle, testing, and treatment options—we also believe in pointing people in the direction of medical support when it’s necessary.

And we know it’s necessary.

We all know approximately 80% of people with sleep apnea are undiagnosed.¹ That number is 90% if you’re a woman, and 95% if you’re a woman of color.^2,3 While clinical sleep medicine conferences are incredible for so many reasons, they don’t increase access to patient education, screening, testing, or care. Only recently have some of the sleep associations begun adding patient advocates and programs.

Amplifying Patient Voices

At SLEEP 2024 in Houston, Cooksey spoke as part of the Sleep Research Society’s Trainee Symposia Series on a panel titled “Sleep Disorders Through Storytelling: How Research Benefits from Patient Perspectives.” Coordinated by Project Sleep, this session brought patient voices to the table with sleep research trainees to discuss the importance and impact of including patient advocates in research.

“My participation at the SLEEP conference would not have been possible 10 years ago,” Cooksey says. “Including patient voices at medical conferences is relatively new, but it’s a really positive change. The perspectives of people living with sleep disorders need to be part of the conversation to reach the best treatment outcomes.”

Social media is another avenue that allows patients to be part of the conversation. Quick tips in the form of infographics, 6-second reels, and 30-second video clips may seem silly to an experienced sleep clinician, but let’s be honest: “Patients are not looking at the [Journal of Clinical Sleep Medicine] for sleep advice.” Funke Afolabi-Brown, MD, FAASM, a triple-board-certified sleep physician, stated this plainly during another SLEEP 2024 session called “Interacting with the Media: What Hurts/Helps with Sleep Education and Advocacy?”

The truth is, social media has the power to be an effective tool in educating the masses and combating medical misinformation—which, unfortunately, also spreads on social media. Social media provides a wide range of access to helpful bits of information, regardless of socioeconomic status, demographics, or distance from a medical clinic. So, whether it’s because of the ease of accessibility or entertainment from those trendy little songs, patients continue to visit TikTok and Instagram for answers about their sleep. Although we’ve all seen the outrageous ads for pillows and pills that claim to “cure” insomnia or sleep apnea, things are improving. Over the last few years, we’ve seen a dramatic increase in “sleepfluencers” and companies that promote their products responsibly and ethically.

Building a Vibrant Community

So, the three of us—Cooksey, Eastman, and I—sent out invitations to a curated list of clinicians and content creators to network one morning before SLEEP 2024 to amplify our influence. There were no lectures, no sales pitches, no continuing education, and no pressure—but there were incredible swag bags for the attendees. Thanks to a primary sponsor, Aeroflow Sleep, we had coffee and snacks, a photo booth, and space to create short videos that we’d all have access to after the event. Although we intentionally made this a smaller, exclusive event, our room was full, and the conversation was flowing.

The invitees ranged from sleep physicians and sleep dentists to podcasts hosts, entrepreneurs, patient advocates, and clinical sleep coaches. They were encouraged to interact with the other “sleepfluencers” who they had previously only met online, and find ways to collaborate to help others. Several attendees were invited to join , a new platform for top voices and trailblazers in sleep.

Attendees freely took photos, talked business, and created new content that would typically take a significant amount of time (and money). Sharing some of this new content online with each other allows us to reach new audiences, and shows patients that we believe in finding the best option to support them in the ways they need. It also beats creating those dancing TIkTok videos…

The event was a success for networking and collaboration. More importantly, it was just a fun start to the day before heading into back-to-back meetings and lectures at the conference. The vibrant community we’re building demonstrates the power of social media in bridging the gap between clinical knowledge and patient education. By leveraging these platforms, we can combat misinformation, increase awareness, and ultimately improve the sleep health of diverse populations.

By Teresa Power

Source: SleepWorld Magazine Jul/Aug 2024 Issue

References

1. Steier J, Martin A, Harris J, Jarrold I, Pugh D, Williams A. Predicted relative prevalence estimates for obstructive sleep apnoea and the associated healthcare provision across the UK. Thorax. 2014 Apr;69(4):390-2.
2. Young T, Evans L, Finn L, Palta M. Estimation of the clinically diagnosed proportion of sleep apnea syndrome in middle-aged men and women. Sleep. 1997 Sep;20(9):705-6.
3. Johnson DA, Guo N, Rueschman M, Wang R, Wilson JG, Redline S. Prevalence and correlates of obstructive sleep apnea among African Americans: the Jackson Heart Sleep Study. Sleep. 2018 Oct 1;41(10):zsy154.