Social POV: Facebook for Patient Engagement

Since its launch in 2004, Facebook has quickly become the most ubiquitous social media platform. From its early days of connecting students on college campuses, Facebook honed its connection-making skills to become one of the easiest ways for people to connect online. In the past few years, it has become apparent that Facebook offers particular value for patient communities. But can pharma be successful in using Facebook for patient engagement?


What is Facebook Used For?

Facebook’s unique appeal might be that it offers a mix of what other social media platforms offer. For example, you can share text, but without Twitter’s character limits. You can share images and videos as you would with Instagram and YouTube. Unlike the other social platforms, however, you can do all of these things in one place. Just like the average Facebook user, patients and caregivers are using the platform to share updates with friends and family, using text, images, and video.

But patients also turn to Facebook for more important purposes. Foremost is the ability to connect to others who understand. Facebook serves as a kind of virtual support group for people who may feel lonely and isolated as they deal with a health condition. Patients use Facebook to learn from patient leaders who have been through what they are going through. Many look to their patient peers for a real, unfiltered look at what a particular medical procedure is really like, or to get an idea of what kind of side effects to expect from a new medication.

Of course, it’s not ideal that patients are seeking medical advice from other patients rather than from their doctor. In many cases, the patient perspective simply serves to augment what they are hearing from healthcare providers. As appointment times continue to shrink, many patients leave the doctor’s office with questions unanswered. Some might not feel comfortable asking their doctors certain questions.

Patient influencers who are active on Facebook groups can fill that gap. This is a responsibility that patient leaders take seriously. They seek to educate and inform whenever possible. This includes being careful to weed out fake news and to manage the overall tone of the group. Kristal Kent, who leads a group for people with fibromyalgia, points out the vital role of group administrators. “The admins of the groups set the tone, whether positive or negative,” Kent says. “Admins have a lot of control over which way a group goes.”

Ultimately, patient communities on Facebook are less about medical advice and more about fostering a safe space for patients to process their experiences together. Whether they are struggling to get a diagnosis, dealing with the ramifications of a new diagnosis, or just handling the daily ups and downs of life with a health condition, Facebook groups let them work through their feelings. It’s a place for patients to feel understood and supported – something they may not feel very often in “real life.” Illness affects every area of a person’s life, from dealing with loved ones to handling new financial stressors. Peers can offer insight and support.

Patients use Facebook to share and discuss health information. They may make public posts from their personal pages, either something personal or sharing a link to an external resource. The private message feature is well-used by patients communicating with one another. Some patient influencers have Facebook pages where they share relevant info and foster engagement.

A WEGO Health behavioral intent study found that Facebook can even impact health decisions.


The group functionality may well be Facebook’s most important feature for patients. As Mark Zuckerberg described in 2017, for some users, groups are particularly meaningful. These are “groups that upon joining, quickly become the most important part of our social network experience.”


Who Uses Facebook?

Both men and women are active on the platform, and there are users across all age ranges from 13 to 65+ years. The 25-34 age group remains the largest group using Facebook, but the demographics are tending to skew a bit older each year.

As Facebook grows, the overall demographic spread is changing. – source


It’s hard to quantify the number of patients and caregivers using Facebook, but there are over six million health-related groups on Facebook, totaling more than 70 million members. There are groups for specific illnesses, groups that cater to the newly-diagnosed, groups for caregivers or loved ones of patients, and groups for patients using a particular therapy. A group for patients taking methotrexate, for example, has nearly 10,000 members. Patients frequently unite over their shared therapy, almost like an exclusive club.

In most industries, there’s an expectation that every business has at least some kind of presence on Facebook, and healthcare is no exception. For pharma, there will often be both a corporate presence and an additional presence for individual therapies. In most cases, patients expect to see pharma and other healthcare organizations show up on their Facebook feeds and may even be eager to engage. For some patients, though, the presence of pharma can feel like an intrusion. This may be one reason why many patients choose to spend most of their Facebook time in closed groups and using private messages.


What About #DeleteFacebook?

It’s been hard to miss the uproar over some of Facebook’s data security scandals. There were trending hashtags and think pieces across the web, urging people to quit the platform altogether. Recent data shows that Facebook’s seemingly unstoppable growth has stalled, at least in the North American and European markets. Many users did indeed cut Facebook from their lives or have made a conscious effort to use it less. Others who chose to stay have made adjustments to their privacy settings.

Some Facebook users are changing their relationship with the platform. – source


For most patients, it’s not that simple. Like a lot of people who chose to stick with Facebook, many patients have taken steps to shore up their privacy settings. Even before these latest security concerns, many patient influencers stepped up to make sure their group members are aware of privacy controls and how to use them. This is especially relevant for health conditions that might be more sensitive in nature. Hyperhidrosis patient leader Maria Thomas urges those in her community to “practice due diligence and don’t assume that anything you say in a private group or on a page will remain private.” Despite these privacy concerns and potential risks, Thomas stresses that “the use of Facebook to bring awareness and support to those who need a voice can’t be understated.”


Patient leader thoughts on using Facebook for patient engagement

While some patients are understandably frustrated with Facebook, the overall landscape of patient users on the network remains active and engaged. This may be largely because there is currently no viable alternative offering the same functionality and flexibility. According to group admin Melissa Adams VanHouten, a gastroparesis Facebook group considered trying to create a similar community off the platform, but the idea wasn’t well-received. After explaining that many of the group members weren’t particularly concerned about privacy, she concluded, “I think it caused our members to think about the value of Facebook and how they would hate to lose access to it or try to ‘rebuild’ on another site.”

While VanHouten’s group is thriving and continues to grow, her story isn’t necessarily a universal one. Casey Quinlan describes a once active BRCA breast cancer group as being a “ghost town” now. She goes on to say that she would never start a group on Facebook today given the company’s business model, which thrives on user data.

Dave deBronkart points out that Facebook’s “only advantage is that everyone is already there.” While this is keeping a lot of patients on the platform, it might also be a big vulnerability for Facebook and a big opportunity for someone else. If a viable alternative existed that offered patients everything Facebook does, plus more reason to trust their data security practices, the exodus many expected back in March may yet come. The current reality, however, is that Facebook is still the best game in town for many patients. They remain active and continue to find a great deal of value in engaging on the platform.


Facebook: Best Practices for Pharma Brands

To meaningfully engage with patients on Facebook, consider the following:

  • Are you adding value to the patient’s life? You can do this through education or entertainment. The goal is for the content to inspire engagement. Since you now know that many patients are using Facebook to seek information about health topics, can you help patient leaders in their quest to ensure their communities have the best information?
  • Whenever possible, be transparent. Many patients are on high alert after data breaches on Facebook and elsewhere. Transparency about how you use and protect patient data can be a good way to build patient trust.
  • Show off your authenticity. A good way to showcase your authenticity is to offer a look at the human side of your brand. Consider highlighting your employees or your efforts to help a charitable cause. Are you striving to be patient-centric? This is a case where show works better than tell. If patient centricity is a core value, let patients see this in action.
  • Show off your empathy skills. To show empathy, consider inviting patient influencers to work with you. Feature real patients whenever possible. Invite and then showcase user-generated content. WEGO Health has case studies showing that patient leader social media ad creative for brands outperforms traditional creative by a significant margin.
  • Be careful with regulatory restrictions. Social media engagement for pharma is something that should never be entered into without careful thought. It can sometimes be a tall order to stay within regulations while also being transparent, authentic, and empathetic.
  • Interact meaningfully. When patients start to engage with you, it’s important to engage with them. Standard social media practices apply. While you should try to respond quickly, it’s vital to use the same thoughtfulness here. You don’t want to risk being tone deaf or insensitive.


Facebook is still where the patients are.

Time will tell what the future of online patient communities will look like. But for now, Facebook remains king. Patients are active and engaged and think of their Facebook experiences as quite meaningful, especially through participation in patient groups.

One of the keys to success on Facebook for pharma brands and other healthcare organizations is to foster authentic relationships with patients. A great way to do this is to ask for help from patients who already have the trust of their patient communities. WEGO Health is uniquely positioned to help. With our network of more than 100,000 Patient Leaders, we are eager to collaborate with you, delivering creative that leads to meaningful results for your brand and for the patients you want to help.

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