5 Top Facebook Patient Leaders to Watch in 2018

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Facebook among online patient communities really IS a big deal. Patient communities aside, let’s first check out these Facebook stats:

  • Every month, there are an estimated 1.39 billion active users on Facebook who spend on average 40 minutes a day on the site. Your siblings, college friends, and even grandparents are now actively liking and commenting on posts, sharing puppy videos, and posting political rants.
  • In addition to your friends and family members, there are now more than 30 million businesses with Facebook fan pages, ranging from retail to pharmaceutical companies.

It’s no wonder businesses have flocked to the FB platform – source


Believe it or not, these numbers continue to grow, especially within the business sector. As you can see, the amount of money spent on Facebook ads is increasing.

Data proves Facebook marketing business is increasing – source


Facebook and online patient communities:

We conducted a Behavioral Intent Study, and discovered just how active WEGO Health Patient Leaders and their online communities are on Facebook. After surveying 433 online community members across seven therapeutic conditions, we confirmed that Facebook is the top platform for the sharing of health information:

  • 87% of study participants say they share health information via Facebook posts
  • 81% of study participants say they share health information via Facebook messages

WEGO Health Patient Leaders view Facebook as a valuable social media platform which helps support their advocacy efforts. These efforts include raising disease awareness and sharing helpful condition-specific resources with their communities.

These Patient Leaders take full advantage of all that Facebook has to offer. From sharing resources, both privately and publicly, to hosting Facebook Live sessions, Patient Leaders are using this platform in the most active ways to educate their communities about treatment options and to help change healthcare for the better.


2017 WEGO Health Awards – Best in Show: Facebook

During this year’s WEGO Health Awards, five Patient Leader finalists were selected for the “Best in Show: Facebook” award category. These finalists are super users of the ever-changing Facebook interface and have turned it into an opportunity to reach an impressive amount of people within their communities.

Here are the top five Facebook Patient Leaders from this year’s WEGO Health Awards:


Top Facebook Patient Leader #1: Sharon Coyle-Saeed

Sharon Coyle-Saeed is an IBD Patient Leader who uses her Facebook page daily to engage her community. With over 5.2k followers and 5.3k likes, she appraises the importance of Facebook in her advocacy work:

“Facebook plays a very vital role in information gathering and resources. From articles that we dissect together for validity, to links for IBD doctors in the area of the patient’s location. Facebook not only can be a great way to navigate one’s personal journey, it also gives information through the sharing of individual experience which is unique and priceless!”


Top Facebook Patient Leader #2: Krystal Kent

Kristal Kent, a Fibromyalgia Patient Leader who is the founder of the Facebook page, “The Fibromyalgia Pain Chronicles” which has over 4.7k likes and over 4.8k followers, contributes to her page daily. When asked how important of a role Facebook plays in her advocacy efforts, Kristal shared:

“Facebook has been an integral tool in sharing information with my Fibromyalgia community. Facebook’s user-friendly tools and easy navigation helps connect more people than any other social media site. For example, the Facebook Live Video Chats give me the opportunity to reach more people, promote the human connection between us, provide support and information, along with answering people’s questions in real time. Further, I can (and have) linked private Fibromyalgia Support Groups to my Community Facebook Page! Because of the variety of Facebook tools available, I am able to connect and support more people in the Fibromyalgia Community!”


Top Facebook Patient Leader #3: Gustavo San Martin (2017 WEGO Health Award Winner)

Gustavo San Martin, the winner of this year’s “Best in Show: Facebook” award, has used Facebook as a platform to raise awareness of MS in Brazil with his page “AME – Amigos Múltiplos pela Esclerose.” With over 24k followers, he hosts the largest MS platform within Brazil and unites the MS community on a global scale.

For Gustavo, without Facebook, his MS advocacy efforts would have only reached a couple of patients, not thousands. He shares with us the important role of the social media platform:

“Leadership presupposes a group of people. No one is a leader alone. In this context, having been named Best in Show (Facebook), I was invited to talk about Facebook’s importance in sharing information and experiences for the Multiple Sclerosis community. The answer is simple: without the tool, my work would not have reached the community, but a few patients. The ease of access to information, coupled with the ability of each individual to produce and share content, is only in the dimension that is because we have tools that amplify the patient’s voice. In this way, digital tools are the future for patients to connect, share and multiply their diagnoses, lifestyles and experiences.”


Top Facebook Patient Leader #4: Krystal Miller

Krystal Miller, the founder of the “Bag Lady Mama” Facebook page (also a nominee for the Hilarious Patient Leader award), has over 35k followers on her page. Krystal contributes daily, sharing personal experiences, resources, and beyond!

For Krystal, Facebook is a platform to raise awareness for invisible illnesses and ostomies:

“10 Years a bag lady and 4 years a mama. I am here to raise awareness for those living with invisible illnesses and ostomies! Let’s remove the stigma and show them how awesome we are, while rocking our Bags out!”


Top Facebook Patient Leader [Group] #5: Love Our Bodies, Love Ourselves

Last, but certainly not least, the Facebook page “Love Our Bodies, Love Ourselves” is the fifth finalist who uses this platform to raise eating disorder awareness. This Facebook page is part of a movement driven by the Provincial Eating Disorders Awareness campaign to raise eating disorder awareness around the British Columbia area. Their mission:

“Our task is to provide leadership to a wide collective effort of volunteers, Eating Disorder professionals, health care providers, counselors, educators, social workers and individuals committed to raising awareness around the prevention, early intervention and treatment of Eating Disorders. This includes awareness of risk and protective factors such as resiliency, self-esteem, media literacy and body image, associated with disordered eating.”


Facebook Creates Change Within People’s Lives and Their Healthcare

These impressive Facebook Patient Leaders are only five of the super users making headway in their advocacy work. A huge shout out to the five finalists who foster an environment where people in their communities want to “Like” and interact on Facebook. There are so many other top Facebook Patient Leaders who skillfully utilize all the tools Facebook has to offer to reach their patient communities.

As you can see, Facebook is no longer just a platform to post selfies. It’s so much more:

  • It’s a platform that is playing a role in changing healthcare.
  • It’s helping patients become empowered by providing resources that help them feel better-prepared for doctor appointments.
  • It’s connecting patients and caregivers with other patients and Patient Leaders who are discussing their conditions and treatments.
  • It’s providing information on clinical trials.
  • It’s the platform centered around support that provides closed and open groups where individuals can connect about their triumphs and tribulations throughout their healthcare journeys.

Through many interactions with Patient Leaders in the WEGO Health network, there is a common theme discussed – and that is the power of knowledge. The more you know about a condition and its treatment options, the more you can share with people who are on the same journey. This results in patients feeling less alone, and it empowers patients to become an advocate for their own health.

Facebook has become a platform that is helping to empower patients on a global scale, and it has been exciting to watch the members of the WEGO Health network jump at the opportunity to further support their advocacy efforts.

Caitlyn has been a part of the WEGO Health Client Services team since 2015. As the day-to-day contact for pharmaceutical and healthcare company sponsors, Caitlyn manages the creation and launch of social media initiatives that work to bridge the gap between sponsors and the WEGO Health Network of online patient leaders. Often bridging that gap means working directly with patient leaders to create sponsored material that better represents the patient voice.

Caitlyn lives in Providence, Rhode Island where she actively wears her New York Yankees gear out of respect for her hometown in upstate New York. In her spare time, Caitlyn plays tennis and explores the restaurant scene to uphold her “Foodie” title.

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