Whether you have a run of the mill knee injury or a rare disease, chances are you’ll seek a specialist, if given the option. And so it goes in marketing, particularly in the highly regulated world of health care. One such specialist firm is Cambridge BioMarketing, which focuses on the marketing of products aimed at the 200,000 or so people with rare diseases.
I recently caught up with John Skolis, Director of Digital Strategy at Cambridge BioMarketing, to talk about its specific challenges and to see what the rest of the marketing world could learn from them. As you’ll soon see, John “prescribes” a number of remedies for the social media blues.
Drew: Do you think there are any lessons you’ve learned from working in your niche that could be applied to the broader social media marketing world?
John: Our work in the niche world of rare disease marketing doesn’t differ too much from how other marketers are using digital and social media. Mass marketers are doing some of the same things we are, but our work is just on a smaller scale – and we have to be smarter in some ways.
We continue to be successful because we are able to tap into what motivates engagement for our users – that’s the key. We develop a deep, intimate understanding of the people in our target. As we continue to engage with our target audience, we glean insights and continually refine our message, content, and digital experience.
Drew: When advising your clients on getting the most out of social media, what are your top three Do’s and Don’ts?
John: Here’s a list of the “Do’s”:
• Set the expectations clearly: Explain that it’s a journey; they need to be flexible to adapt to how the community accepts or rejects their message.
• Align with legal and Promotional Review Committee (PRC) teams. Don’t be the third-wheel that everyone talks about — be their ally and keep them looped into everything you do. Work with them to develop the worst case scenario and plan for how to deal with it.
• Always have a Plan B: Some of marketing is trial-and-error to determine if a message is working or not. While you hope everything works out, discuss an exit plan for the campaign if it’s not gaining the desired traction, and have a plan B in place to keep the train moving.
And here’s a list of the “Don’ts”:
• Post inconsistently: The worst thing that can happen with a social campaign is inconsistent posting. It creates a disjointed presentation and makes users weary of your channels and credibility.
• Forget the size of your audience: It’s important to remember that there are only a few patients across the globe that you are trying to reach. Social media inherently skews towards mass trends so it can take a while to find users. It’s also helpful to tie into causes to disseminate the message. Remember, in rare disease, a few interactions can be cause for celebration.
• Focus only on the patient: At the end of the day, most clients are looking to reach patients to have them enroll in upcoming clinical trials or getting them on a drug. They can lose sight of the value of the larger community, the caregivers and hand-raisers. Make sure to emphasize the importance of engaging everyone in your community and encourage them to carry the message, boost reach, etc.
Drew: Let’s get specific. Tell us about the challenge you faced with a particular client/brand?
John: The typical challenge with clients is getting them to redefine how they use social media. When most people think of social media, they think it can only be used for mass marketing because everyone and their mother are on it. It’s true that there are a lot of users from the general public that have a presence on various social channels, so some messages on these platforms are generalized to resonate with this vast number of users.
However, communicating about rare diseases or orphan drugs through social channels is not intended to reach the general public. Social media, in this case, is used to empower people who have the disease and identify “hand raisers.” A major challenge is just getting clients to simply understand and redefine how to use social media and then the next challenge is actually making it happen.
It’s a science and an art to tap into these niche patient populations, so we rely heavily on the “hand raisers.” These individuals include caregivers, physicians, undiagnosed patients that exhibit similar symptoms to some rare diseases, and those that are genuinely interested in the topic. These folks help spread the word.
For example, we worked with Intercept Pharmaceutical to raise awareness of primary biliary cholangitis (PBC), a rare liver disease that affects women in their later years. We developed a patient community, LivingwithPBC.com to garner awareness of the disease. We wanted to develop a way for users to engage on the site to increase our reach, so we created PBC Post, where users can create e-cards that are published on the site to motivate patients or caregivers to keep fighting. While it’s a great idea, it’s a lot of work for “hand-raisers” because they need to create the card and then promote it on their social channels.
Drew: How did you address this challenge overall, and how did social media fit in?
John: The goal of the social media component is to promote the patient community, LivingwithPBC.com, by asking users to share the link on their social channels, and/or create e-cards to increase reach. These users are patients, caregivers, and the “hand-raisers” described above that are critical to the success of the program.
Drew: What were the results of the program?
John: LivingwithPBC is ongoing, but to-date we have been recognized by the MarCom Awards and The Webby’s for the unique user experience.
The website has connected numerous patients and caregivers — and the sister publication, RethinkPBC.com, has educated physicians about the disease, as it’s commonly misdiagnosed.
Drew: How about another mini-case history?
John: The Steps Ahead of Gaucher campaign serves as another good example. We asked participants to use bright green shoelaces to show their support for, and raise awareness of the disease. Gaucher is a deficiency in a particular enzyme; symptoms include bone pain, severe fatigue, and life-threatening complications. This campaign let individuals express their commitment by using the laces to create bracelets, dog collars, headbands, etc. and then posting pictures of the items on social media.
For the Living with PBC campaign, we needed to reimagine how social media is used to reach very niche audiences, while simultaneously tapping into the potential to reach a broader range of individuals to generate increased awareness and engagement. In contrast, for Steps Ahead of Gaucher, we used social media as a traditional tool — to reach mass audiences — and it was the focal point of the campaign with a branded hashtag, #stepsaheadofgaucher.
Even though our work on the campaign concluded, users continued to submit photos and use the hashtag for another year or so. It was great to see the ongoing momentum for Steps Ahead of Gaucher because it was before the time of fad videos, such as “The Ice Bucket Challenge” and “22 Push Ups.”
Drew: You’re dealing with some pretty sensitive diseases. How do you make sure that social media engagements are equally sensitive?
John: It all comes down to developing a good understanding of the users and what motivates them. For example, there is a lot going on in the Duchene Muscular Dystrophy (DMD) space right now with clinical trials, drug approvals, and more. Members of this community are knowledgeable about the disease and know all of the pharma companies researching treatments. They are aggressive and want to speak clinically, almost like a physician, so campaigns targeted towards this audience would be completely different than someone with PBC.
Typically, patients and their families have been through a long journey to receive a formal diagnosis. And more times than we’d like to admit, there is no treatment, or even research around their disease. Along the road to a diagnosis, they have been misdiagnosed and incorrectly stereotyped. Therefore, when we begin a campaign, starting with disease awareness, most individuals are happy to be recognized as someone who is overcoming the challenges of the disease.
Once the target users are defined, then it’s all about determining where the message is going to resonate. In the beginning, it’s a bit of trial-and-error, but based on our CB tribal knowledge and understanding of the space, we have a good sense of what works and what doesn’t. This starting point, combined with our team’s ongoing research on social channels, we’re able to form a hypothesis to guide the message and target channels to reach these users. From there, we conduct research (in-depth or third-party) to validate our line of thinking, or go back to the drawing board.
Drew: Your firm has an interesting niche. Can you give us an overview of the clients you serve and what you do for them?
John: CB is a specialized marketing agency that focuses on rare diseases. To offer background, a rare disease affects 200,000 or fewer people. More than 7,000 rare diseases are in existence today with new ones being discovered. However, these conditions are more common than people would think, as one in 10 Americans have a rare disease. CB decided to focus on this niche market because you can really see the meaningful impact our work has on patients and their families.
To reach these targeted populations, we typically take a “disease first education” approach in which we educate patients, caregivers, and even physicians about a disease for a year or two before rolling out the treatment for the illness. This approach works because, as you can imagine, it can be challenging to promote a treatment for a disease that affects 200,000 people, but it’s nearly impossible to market a drug for a disease with no name recognition and a niche audience.
This “disease-first education” approach aligns with marketing programs built around cause because we are targeting people who are affected by these conditions, but it’s also for people who are genuinely interested in learning more.