Social Media Tribes: A Challenging Opportunity in Specialty Pharmacy


How the re-emergence of social media tribes has shifted patient expectations of specialty pharmacy communication

Social Media Takeover

As a millennial, I must admit that I spend a lot of time on social media. It has become a primary means of communication for my friends and family and a common source of information to use when making decisions—from purchasing a new car, to exploring a new restaurant.

As a health care professional, I can see a clear difference between crowdsourcing advice on these topics and posing a clinical question on a social media feed; however, we see patients asking health-related questions on social media frequently.

When I see a patient post a question on social media about their health condition or their specialty medication, it’s really a catch-22. As a specialty pharmacist, I’m trained in HIPAA privacy law and I know that it’s extremely important to treat patients’ personal and protected health information (PHI) with the utmost care to ensure that their privacy is safeguarded.

I would be concerned that if I responded in this public forum, I would put the patient’s privacy at risk. On the other hand, I want to make sure that the patient receives a clinically appropriate response.

This becomes a source of frustration to me, as I know that we go to great lengths as specialty pharmacies to expand our digital platforms to improve accessibility for patients. This begs the question, are we doing enough?

Why do patients turn to social media rather than directly to their specialty pharmacy for answers to their clinical questions? How can we meet patients where they are—in the social media space—while guarding patient privacy and maintaining regulatory compliance?

The Tribe Concept

Multiple studies have shown that more than 75% of Americans use social media to research their symptoms or find advice about medical conditions. Using social media for health care research is even more prevalent among millennials.

According to the PwC Health Research Institute, 90% of millennials said that they trust health care information posted on their social media feeds. However, it’s not just the millennial generation communicating with peers via social media.

Recent studies have shown that the 55 to 65 age group is among the fastest growing demographics engaging in social media. While trying to determine what may be driving this behavior, I recalled a TED talk that I had heard by Seth Godin.

Seth Godin is a best-selling author and an expert in marketing and the spread of ideas. He talks frequently about the concept of re-emergence of tribes in our society. In his TED talk, “The tribes we lead,” he discusses the ways in which the spread of ideas has shifted over time, from the industrial revolution, to the 21st century.

One of the most striking ways that this shift has presented itself is through the evolution of marketing, from mass-marketing to tribe marketing. In the days before social media, mass-marketing was king.

The thought was that as long as the consumers in a specific market segment could see the message, they would believe it and purchase the marketed product. The marketing industry was centered on this CompanyàConsumer pathway.

As the internet and social media have evolved over time, marketers have realized that consumers’ social circles, or tribes, drastically affect their purchasing decisions. The tribe marketing approach “proposes that social associations are the most important influence on an individual’s consumption decisions.”

For this reason, many marketers have shifted their marketing strategy to include the tribe of the consumer to drive not only repeat purchases, but loyalty and advocacy. In this method, the pathway changes to CompanyàConsumeràTribe. So what is a tribe?

Years before social media was a part of our culture, sociologists predicted that there would be a resurgence of tribal behavior in our society based on our ability to communicate easily with each other online. Tribes are typically made up of like-minded individuals, who may or may not be geographically linked, and who engage in shared rituals, emotions, beliefs, or consumption practices.

These activities create a link between members of a tribe that enables them to develop trust, and to share ideas openly in order to create value for members of the community. Members create a mutually-beneficial tribe identity that unites them and drives the group collectively forward.

This theory explains why patients may look to their friends on social media to answer their clinical questions, as they may have more trust in members of their tribe than in someone that they do not know, even if that person is a medical professional.

Crowdsourcing information from tribe members with similar interests provides consumers with what they perceive as unbiased information. Consumers no longer need to believe the owner of a restaurant dubbing their food as “the best in town” when they have reviews from customers who have eaten there.

Consumers do not need to trust the pictures of a resort hotel taken by their marketing team because they have pictures taken by individuals who have stayed at the resort. Due to this skepticism, consumers have become better over time at avoiding commercials and advertising at all costs where possible.

We record our TV shows so that we can fast forward through commercials and pay a few dollars a month to listen to our music ad-free. How can specialty pharmacies provide unbiased clinical information to our patients and their tribes on social media in a way that not only benefits them from a clinical perspective, but also creates loyalty and advocacy for the specialty pharmacy brand within the tribe?

Our Responsibility to Specialty Patient Tribes

The tribe theory provides insight into our patients’ changing needs and how these changes affect their expectations of their specialty pharmacy. Patients expect to have their questions answered real-time by a trustworthy source who they feel is unbiased and shares their values.

If we are able to meet these patient expectations, we will develop meaningful relationships with our patients and their tribes, and this can lead to improved brand loyalty, decreased switching behaviors, and increased patient satisfaction. These are important benefits of this relationship, but even at a foundational level, it is critical that we find a way to meet these needs to ensure that our patients are receiving credible clinical information.

When caring for patients with complex chronic conditions, we must ensure that we are present and prepared when they have questions via their preferred contact method. We must find a way to demonstrate trustworthiness and once we gain trust, we must be accessible and protect privacy.

Opportunities and Barriers

Social media use is on the rise. With Facebook usage increasing approximately 7% year over year and 68% of American adults currently using it, we have an opportunity to reach a significant amount of the population through the use of just a single social media outlet.

There are many ways that we could approach this opportunity. First, we could attempt to find established patient tribes by creating a search or algorithm that looks for patients based on specific keywords.

In this way, we may find patients or patient groups who are looking for clinical assistance with their specialty disease state or medication. Another approach could be to create patient tribes by grouping patients based on their responses to a set of predetermined questions.

These questions could inquire about their disease state and medications, as well as their values and consumption behaviors, to enable us to match them with others who may have shared qualities. We could then structure tribes based these criteria, possibly providing them with clinical resources, as well as answering questions.

Both of these approaches sound like they could be successful based on our discussion of tribe marketing theory. They would enable us to create a tribe based on shared values, allow patients to create a shared group identity, tell stories, and discuss meaningful information; however, in the specialty pharmacy space there are significant barriers to setting up this type of communication with patients.

HIPAA privacy law, licensing laws, and tracking of adverse drug events are some of the primary barriers to engaging in social media communication with our specialty pharmacy patients. Ensuring compliance with HIPAA privacy law while interacting with patients on social media is a significant challenge.

Even an inadvertent disclosure of PHI, such as a patient photo, could result in substantial fines and penalties. In order to comply with HIPAA, we would also need to be prepared to show documentation of any electronic patient communication if requested in an audit scenario.

A medical web experts blog suggests developing an internal approval protocol that involves legal and compliance departments for content prior to posting on social media. This approval process would likely slow down posting of content on social media.

Licensing laws also present a challenge when counseling patients online. In order to provide clinical counseling, typically the pharmacist or pharmacy must carry a license for the state in which the patient is located. These laws would need to be reviewed and followed in all counseling scenarios.

Lastly, many specialty pharmacies have adverse event reporting obligations based on their contracts with pharmaceutical companies. If a patient discusses an adverse drug event on social media, the pharmacist must report via appropriate channels, typically an FDA MedWatch form.

Since sharing stories and experiences is a core concept associated with tribes, there would likely be a significant number of adverse events shared in these forums, which would require diligent reporting protocols. Even though these barriers exist for specialty pharmacies working to engage with patients via social media, the tribe theory and an increase in the use of social media for health care research presents an excellent opportunity.

We have a responsibility to our patients to communicate with them via their preferred method, and that method is increasingly #trending towards social media.

About the Author

Kimberly Firtz earned her Doctor of Pharmacy degree from Duquesne University and earned her Masters of Science in Pharmacy Business Administration degree at the University of Pittsburgh, a 12-month, executive-style graduate education program designed for working professionals striving to be tomorrow’s leaders in the business of medicines. Kimberly has spent the last 5 years working in specialty pharmacy, initially as a clinical pharmacist and most recently working on a variety of high profile Specialty Operations Projects. Her current role is working with the Process Innovation team on an effort to transform specialty operations and optimize the stakeholder experience.

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