The future of social media and pharma: collaboration


In Siren Interactive’s second of five rare disease articles, Katie Mihelich takes a look at pharma and patients’ use of social media. It’s hard to believe that popular social media has been a part of our lives for almost a decade now. This increased connectivity has…Katie Mihelich

Siren Interactive

In part two of five, Katie Mihelich from Siren Interactive takes a look at the history of pharma’s use of social media in the rare disease space and its transition over the years from a ‘social listener’ to a ‘social engager’.

(Continued from “How gene therapy is transforming medicine”)

It’s hard to believe that popular social media has been a part of our lives for almost a decade now. This increased connectivity has dramatically changed the way people communicate, especially people with health concerns and, in particular, those with chronic and rare diseases. To better understand what the future of social media holds for the pharmaceutical industry, it is useful to consider the recent past and the ongoing evolution.

Social listening

Patients have been interacting online since the dawn of the Internet. Some people are surprised to learn that online discussion forums and listservs dedicated to specific patient populations had their genesis in the 1990s, before the advent of Facebook or Twitter. However, when we consider that people with health issues (especially rare ones) are driven to find the information they need, it makes perfect sense.


"…online discussion forums and listservs dedicated to specific patient populations had their genesis in the 1990s, before the advent of Facebook or Twitter."


Fast forward to 2008. Facebook and YouTube are becoming popular, and other social networks are rapidly expanding. Patient populations that were previously confined to dark, unsearchable corners of the Internet began migrating to central locations and holding their conversations on these popular social media platforms. Platforms specific to health conversations (such as PatientsLikeMe and Inspire) were created to facilitate these interactions. An increasing number of patients and caregivers began sharing their personal journeys on blogs.

This was a monumental shift, pharmaceutical companies gained unprecedented access to the opinions of their audiences and opportunities to listen to and understand the challenges and perspectives of their patient populations in real time. Knowing where to find the right patients and understanding their language, terminology and unmet needs are essential for developing an effective media strategy and for creating content that drives action.

By participating in social listening, pharma could gather data straight from the source: the patients. The end result of effective social listening is not only a better understanding of patient needs but also a familiarity with the social channels they use and the ways they interact. These insights are now frequently used by pharmaceutical companies to shape education and support programs and drive next-generation therapies.

Social engagement

With non-regulated industries leading the way, pharma eventually created two-way channels of communication by actually joining the conversation. What ensued was a period of transition that is still ongoing: pharma companies are shifting from the position of listener and observer to a role of engagement.

Social media has made it easy for pharma to meet the patients (and other target audiences such as potential employees and investors) where they are already spending their time. Pharma started utilizing the most popular social networks — Facebook, YouTube and Twitter — for corporate reputation and brand and disease awareness.


"…pharma companies are shifting from the position of listener and observer to a role of engagement."


Patients are already in the social arena. Pharma’s ability to meet them there and to foster the growth of community within specific disease populations is the next step in moving toward a more collaborative model of healthcare.

Case study: engagement and collaboration around disease awareness

Social media provides a vital link to information for rare disease patients and caregivers — the undisputed “power users” of social media. So it makes sense that rare diseases would be leading in this space. An example of successful engagement on Facebook is Lundbeck’s Huntington’s disease (HD) page. About 25,000 people in the US have HD, which is a rare, neurodegenerative disease characterized by a triad of progressive motor, cognitive and emotional symptoms without a cure. In particular, rare disease patients are looking for pharma companies to play a supportive and engaging role.

“We did an initial landscape assessment and found that while the advocacy organizations were doing a wonderful job, there was a still a need, in particular, for HD caregiver support,” notes Katie White, communications manager at Lundbeck. “HD is an incredibly isolating disease, and HD patients and caregivers have a need to share their experiences and connect with people who understand what they are going through. You often see community members interacting and helping each other in the conversation streams.” Using social media also provided an opportunity for Lundbeck to highlight fundraising events, education days and other resources that are available to the HD community.

White explains that to be compliant with existing FDA guidelines, the page focuses only on disease awareness. Lundbeck has work instructions to manage the entire Facebook page process, and the team is committed to a prompt turnaround for approval of posts and comments.


"…rare disease patients are looking for pharma companies to play a supportive and engaging role."


The Facebook page has successfully created engagement between Lundbeck and the HD community. White notes, “The HD community wants a voice, they want help raising awareness for this little known and often misunderstood disease. It’s important to have a two-way dialogue because we want feedback to ensure that the resources we are providing are useful and relevant.”

“We continually use our learnings to better meet the community needs.” White says that Lundbeck is also moving into collaboration, “For example, we are developing an HD infographic based on feedback from our patient ambassadors and from the Facebook community.”

[Full disclosure, Siren Interactive works with Lundbeck on the HD Facebook page.]

Social collaboration

The role of social media in healthcare does not end with engagement. In the future, healthcare solutions will be increasingly driven by mutual cooperation between pharma companies and patients. Social media will continue to provide the channels for open, two-way dialogue and user-generated content, and input from both sides will be required to meet patient needs. A few pharma companies are privately and publicly asking for feedback on new and existing programs. Current crowdsourcing includes efforts to design more effective clinical trials, gather research data online and provide input on support programs. We’re even seeing user-generated content — one example is the Boehringer Ingelheim competition in which users sent in photos via Facebook.

A number of barriers still hinder effective teamwork between patients and pharma, including regulatory concerns. But social media provides a shared platform for patients and healthcare organizations, and I look forward to this new era of collaboration and content co-creation.

Read the next rare disease article in Siren Interactive’s 5-part series here.


About the author:

As vice president of account services at Siren Interactive, Katie Mihelich is responsible for building effective client relationships, directing account strategy and leading the development of rare disease online marketing programs that leverage the power of MicroTargeting™ to drive new patient starts and lifelong adherence to therapies. She has supervised the development and execution of numerous rare disease marketing programs with ROI-positive results for a variety of healthcare organizations including Baxter Healthcare Corporation, Endo Pharmaceuticals, Novo Nordisk, Genzyme and NPS Pharmaceuticals.

Katie is an alumna of Kellogg School of Management at Northwestern University in Chicago and holds a master’s degree in integrated marketing communication and a bachelor’s degree in public relations and marketing from Drake University in Iowa. She was honored by the Healthcare Businesswomen’s Association as a 2007 Rising Star. For more information, email Katie at or visit

How will pharma continue to use social media to engage with rare disease patients?

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