Patients who join online communities to discuss their condition talk infrequently about celebrities promoting brands that treat their illness. It is true that patients within online communities occasionally recognize a celebrity for bringing needed public attention to the disease, but, alternatively, they also occasionally make a point to criticize celebrities presenting the image that it has little day-to-day impact on patients’ lives. The latter surfaces in psoriasis communities who feel Kim Kardashian, a psoriasis patient herself, fails to use her public platform to promote awareness of the real challenges of the disease.

But typically, the celebrity is not of conversational interest in online patient communities. While pharma sales may demonstrate that celebrities are a helpful tool in a marketing kit, patients in online communities demonstrate that they spend a lot of time wrestling with the practical and psychological challenges of illnesses. They come together to crowdsource disease management and life management tips to deal with their illness.

Within these communities live what we might call in-group patient “celebrities”—patients who play the role of patient key opinion leaders within this loose society.

These are real-world “celebs,” perceived to have skin in the game, to walk the walk.

Patient leaders can be appointed or, more frequently, simply rise to the top, appreciated as active members of the community contributing valuable information, resources, and advice.

Leadership styles vary based on the person and culture of the community. Just as the leadership style of the woman who runs your business unit is different than the style of the woman who runs your friend’s business, so do online patient leaders.

For instance, a community leader can take the approach of Moderator (sometimes even as a formally designated moderator in a forum or online community) or of Information Disseminator—distributing breaking news in the disease state. Patient leaders sometimes run their own blog, giving them a larger stage from which to share information or provide narratives of their personal experience.

We took a look at highly active online autism communities to understand how individuals are taking distinctive leadership roles—and making an impact in different ways.

The Mayor

The Mayor is an active presence in the forum, frequently commenting on other patients’ posts and providing factual responses and resources to those with questions. She or he both gives and receives advice on living with the condition—and keeps dialogue among community members going.

A prime example of a Mayor is KraftieKortie, a veteran poster on WrongPlanet.net. He self identifies as a 55-year-old male with Autism/Asperger’s. He has posted more than 23,000 times since 2014. He is well known and referenced by other members of the community when they give advice as well. He is also quite well liked by the community, so much so, that an entire thread is dedicated to him: “We Love KraftieKortie.” He provides advice, resources, and general support to the members as well as engaging in back-and-forth conversations.

The Librarian

The Librarian is a disseminator of research, clinical trials, and advancements in treatment possibilities. The Librarian elevates the level of scientific knowledge and discourse on the forum. While this type of patient would not be an ideal candidate to serve as a spokesperson, she might share press releases or news updates about scientific advancements.

Within the autism community, ADHDmomma of ADDConnect is the community’s Librarian. She has more than 160 posts in many different threads. Most of her posts are responses to members, with redirects and information. Her role is very close to a Connector (below), but her advice and language is not specific enough, and more generalized, aligning her as a more resourceful Librarian.

The Amplifier

The Amplifier chronicles her ongoing struggles to find a solution to her symptoms. Her emphasis on an ongoing struggle to find a solution—in patient-friendly language—makes her a relatable voice to others in the same phase of the journey.

Cakeistruth is the amplifier of the Autism Reddit community. She self identifies as an 18-year-old female with autism. She genuinely tries to help others by providing her own experience, resources, and well-integrated arguments about treatment types. She isn’t afraid to express her opinion and articulates concern about parent language regarding autistic children. She reinforces her position with well-informed arguments.

The Connector

This Connector’s mission is to link patients and caregivers who ask questions with the best answers—or the best people to respond. She might identify particular doctors or hospitals in a poster’s area who specialize. If she does not have insight into a specific nuance of the condition, she’ll tag another forum member to help.

An example of a connector within the autism community is PolterGoose of MumsNet.com. She engages and promotes member-to-member communication, responds directly to members and provides useful links.

Three Implications for Pharma

The roles of social media patient leaders highlight the slow-building seismic shifts in healthcare, a world where patients are increasingly claiming greater authority and agency in management of their own health.

These new realities present at least three big implications for pharma professionals:

1. A new authority in healthcare. Patients are increasingly triangulating answers and their path forward, depending on an increasingly complex array of resources outside the doctor’s office and turning to peers and peer experts for explicit and implicit guidance. The people, positions, and institutions recognized as “authority” and the very definition of “authority” is shifting.

2. Speak the patients’ language. A second implication is the criticality of meaningfully hearing patients’ experiences, perspectives, and approaches in order to engage with them with language attuned to their experiences and viewpoint. Because patients recognize their lived experiences and their peers’ experiences as essential information and knowledge, it becomes increasingly important that pharma professionals honor that knowledge in order to establish credibility and trust.

3. Patient community leaders are the real “celebrities.” There is value in connecting and partnering with real-world, in-community, skin-in-the-game “celebrities” to deliver authentic messages. Particular genres and styles of messages need to be appropriately paired with these in-community leaders. The Librarian is a good partner for ensuring the dissemination of news about your brand (e.g., latest trials results, approval, launch date, etc.) The Mayor might become your go-to person to share experiences using your brand; of course the Mayor may report problems but the upside is that the experiences relayed come with authenticity. Part of the pharma professional’s role will be to ensure their partner has a good understanding of the brand and that the relationship between pharma and patient is strong. But the other crucial piece will be ensuring authentic communications within these tight-knit communities where being real leads to credibility and trust.

  • Pamela Batzel

    Pamela Batzel is Sr. Director of Consulting Services at Treato, the single largest source of online consumer insights on healthcare. Pamela was instrumental in building the consulting team, which she now leads—conducting deep linguistic analyses on social media data to understand patients’ experiences and perspectives.

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