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The Role of Digital Media in Reaching Rare Disease Patients

7,000 known rare diseases
30 million live with a rare disease
600 medications in development

Marketing to rare disease patients requires elements of traditional funnel-based marketing and partnership with a nexus of patients. The marketing of new orphan drugs begins long before the drug commercialization strategy is developed. The orphan drug is produced in partnership with a patient group that earns early access to the drug through trials and testing. Plus, financial support and patient-assistance programs are simultaneously co-developed to make the medication affordable.

Once a commercialization strategy forms, digital media can be employed to scale the marketing message to the next patient group, where the drug is marketed through educational channels that reach doctors and patients.

For undiagnosed patients, their search for a solution may begin in online chat forums or on social media where they discover that they are not alone. Patients may offer clues in the keywords they use, directly or indirectly, identifying symptoms, behavioral patterns, and in comments surrounding their health. They may also reveal intimate details – the type people only share with their personal phones when searching privately. For the digital marketer, these are clues that can reveal a target patient group and feed the top of our marketing funnel.

The marketing funnel strategy – common in e-commerce – casts a wide net to find the preverbal needles in the haystack.

The digital marketer may also face challenges in filling the top of the funnel that a typical e-commerce marketer may not encounter. For example, some patient populations may work through a proxy to find a solution. This is often the case for 50 percent of rare diseases that impact children. Here, the end-user is not the recipient of the marketing message, and the strategy must adjust to profile parents and caregivers, alike.

The following digital media strategies can be employed to reach these audiences with a traditional sales funnel approach:

Narrow the Marketing Funnel with Education

In the early stages of patient recruitment, deploying educational material is critical. Create a foundational education website that includes keyword-rich patient impact studies and define common symptoms. Fill the top of the marketing funnel using broad, symptom-based keyword searches (on search engines and social media) that can attract patients, doctors, and caregivers to the site. The site may also include an advice hotline staffed with nurses to screen candidates, local doctor referrals, portable tests that can be requested by mail, questions to ask insurance companies, and video testimonies from diagnosed patients.

Take Advantage of Mobile Targeting and Micromoments

People share private and embarrassing medical information with their mobile phone searches that they may never share with a doctor. For example, a patient may be pacing the aisles of a local pharmacy late at night. He is unable to sleep because of a skin rash – a symptom of a rare disease – that he won’t share with his doctor for fear of embarrassment. This scenario creates a “micromoment” where people reflexively turn to their phones to act on a sudden need to learn, buy, or discover something. In this case, he may perform a Google search and describe the rash in precise detail. Marketers can anticipate this moment by geo-fencing pharmacies at night and targeting search ads that reflect the rash’s symptoms.

Target Doctors Through New Social Media Apps

Promoting peer-reviewed medical research for orphan drugs can reach doctors through sponsored ads on popular social media apps. Through social apps, such as Doximity – which reaches more than 85 percent of all U.S. doctors – orphan drug clinical studies can be shared (think LinkedIn for doctors). The Doximity app allows a closed network of doctors to connect and share ideas through HIPAA-compliant messages, access clinical research, and share electronic medical documents and patient charts. Doximity supports sponsored ads with robust segmenting controls that can target audiences geographically, socioeconomically, and through a doctor’s clinical interests, trial work, and coauthored article subject matter.

Get the Language Right in Search and Social Advertising

Based on the research and relationships formed with the trial candidates, incorporate the keyword vernacular used to describe the symptoms, complaints, and behaviors of your target audience. For example, if morning fatigue is a symptom, how are patients expressing this fatigue on social media? Are they “sleepy,” asking “why am I so f*cking tired” or “sleeping fourteen hours a day.” One could conclude that a strong cup of coffee is the solution, whereas chronic sleepiness can be a sign of something much more severe. Choose keywords that reflect the disease state, temperament, or psychological profile of the patient.

Machine Learning and Look-a-like Patient Targeting

Through artificial intelligence (AI), digital marketers can discover audiences who don’t realize what they have in common with each other. This approach is especially helpful for ultra-rare diseases.

Marketers can obtain insurance claim and prescription data from the initial patient audiences and leverage the data using AI to build out look-a-like models. This strategy, which utilizes targeted data, can reveal previously unknown patients who show similar characteristics as those currently in treatment.

Once these patients are identified, marketers can pinpoint physicians and patients with targeted digital advertising to support and expand client opportunities.