Maximizing Consumer Engagement with People Living with Rare Disease
Published August 2, 2023 | 4 Minute Read
By Scott Schappell
Chief Revenue Officer
Health Union
The life sciences industry has made proactive strides in recent years within rare disease. With more than 30 million people in the U.S. living with 7,000 individual conditions, according to the National Organization for Rare Disorders (NORD), the increased clinical attention and treatments in development are meaningful to a small, yet important, segment of the population.
In 2022 alone, more than half of the U.S. Food and Drug Administration’s novel drug approvals were for patients with rare diseases. As awareness grows and treatment becomes more readily available, it’s important for the industry to find ways to engage with the rare disease community to find the right treatment.
For pharma marketers who have decades of experience executing traditional marketing campaigns around prominent chronic concerns, like diabetes, cancer and asthma, building an effective consumer engagement campaign around a specific rare condition can be challenging.
The best starting point, of course, is understanding the obstacles faced by the people living with those conditions. The simple fact that one’s condition is rare means that finding information – specifically reliable and relatable information – is difficult. And finding a healthcare professional who has experience with, or has even heard of, their condition can be an arduous task, especially for people living in rural areas.
The other big obstacle is finding treatments that work. Even with increased development, more than 90% of rare conditions lack an FDA-approved treatment, according to NORD, often severely limiting treatment options. This can lead to a number of concerns, including pursuing clinical trials as treatment and the unapproved, or “off-label,” use of FDA-approved medications, which can lead to insurance problems even if the treatment proves effective.
Understanding the difficulties people with rare conditions often face along their patient journeys can help to set the table for many of the challenges life sciences marketers typically face when trying to engage with these individuals. Here are three overarching challenges marketers in this space often face, and helpful steps for overcoming them.
Reaching People with Rare Conditions
The first challenge is finding ways to reach people with rare conditions. In a world where much of the information gathering people do around their conditions – both before and after their diagnosis – occurs online, the question becomes, “What online resources are people using?”
Health websites, online health communities and non-profit websites are all great starting points for understanding the patient journey and needs. For many with rare conditions, it starts with an internet search, which can be insightful for pharma marketers. In particular, people with rare conditions might be more likely to be searching for certain symptoms, especially if they are pre-diagnosed and don’t know their condition.
Broad-reaching, endemic health websites cast a wide net in terms of what conditions they address or cover; depending on the individual condition, these sites might have relevant content or information where advertising makes sense. Condition-specific online health communities and forums, especially those that are moderated and have relatable content, often have the audiences that marketers want to reach.
Additionally, partnering with entities, such as non-profit, condition-specific societies and foundations, that understand various facets of living with specific rare conditions can be helpful in reaching consumers. It is also worthwhile to consider influencer marketing campaigns with patient leaders in the rare disease space. These individuals have developed significant relationships and trust with their followers, many of whom share their conditions.
Unfortunately, some commonly used, broader-reaching digital tactics, such as programmatic and audience modeling, that reach people with more pervasive conditions are not as effective when applied to rare conditions. Working with entities that intentionally reach the rare disease population can be an avenue for casting a wider, yet targeted, net for life sciences companies to offer relevant solutions.
Engaging with People with Rare Conditions
Figuring out the most appropriate or helpful way to engage with people with rare conditions comes down to two key approaches: a) making an emotional connection and b) providing valuable information or resources to educate or assist them in their health journeys. In addition to the primary research a life sciences company might conduct around a specific condition, there are a number of strategies that can be considered universal for people with rare conditions and satisfy at least one of these approaches.
With finding HCPs that treat or understand a specific rare condition being an ever-present challenge, pharma marketers could consider implementing a physician finder tool. Similarly, an interactive symptom checker could be helpful for those who have not yet been diagnosed and potentially drive individuals to an HCP. Integrating either into a branded or unbranded website can help boost engagement among individuals who are early in their health journey.
In terms of establishing an emotional connection, providing videos or testimonials of other people living with the condition can be pivotal in humanizing the condition and the experience. Outside of a pharma branded or unbranded site, marketers can consider partnering with online health communities, forums or other vendors who have established relationships and an understanding of various aspects of the patient journey.
Finally, since rare disease treatments are often linked to financial concerns, providing information about financial resources or insurance reimbursement will contribute to positive engagement and fulfill a frequently unmet need. For example, a 2021 Health Union survey found that, when patients started a treatment plan, financial topics, such as cost, insurance coverage and financial assistance, were not among the top 10 issues discussed with their HCPs.
Measuring the Success of a Rare Condition Marketing Campaign
Unsurprisingly, the challenges with measuring the success of a marketing campaign around a rare condition begin with the rarity of the individual conditions. For many rare conditions, the size of the population often makes it difficult to leverage traditional metrics to evaluate performance.
When it comes to this market, high-value actions that consumers take when visiting a branded or unbranded site can be more compelling and indicative of performance than numbers alone. Some of those actions can include:
- Savings card downloads
- Patient testimonial/video views
- Customer relationship management (CRM) campaign sign ups
Considering the role that various partners, like nonprofit organizations or patient leaders, can play in the success of a rare condition campaign, paying attention to how consumers get there can indicate whether content or tactics need to be modified.
As a result, measurement of rare condition marketing efforts really rely on how effectively a marketer is impacting behavior as a way to understand relevance. Given the size and nature of the rare condition market and the availability and awareness of treatment options, quality measures likely can, and should, outweigh quantitative ones.
Scott Schappell is the chief revenue officer of Health Union.
Related Articles
Rare Conditions: The Impact of Mental Health Concerns
More than half of NMOSD In America 2022 respondents said being diagnosed with NMOSD has negatively impacted their mental health.
Understanding Rare Conditions: The Multifaceted Financial Impact
More than a third of Health Union’s Myasthenia Gravis In America 2022 survey respondents said their condition has negatively impacted their finances.
Living With Crohn’s & Rare Disease: Aaron Blocker
The winner of the 2022 Social Health Award for Revolutionary Researcher is Aaron Blocker. Aaron lives with Crohn’s disease and an ultra-rare genetic metabolic bone disease called hypophosphatasia. He uses his background in scientific research to break down those hard-to-understand topics related to his conditions so that patients can understand the most recent research and breakthroughs.
