How do you find one person in a crowd of two thousand? This may sound like a video-game quest or a scavenger-hunt riddle, but if you work on a brand that treats a rare disease, it’s your everyday challenge.

Rare diseases affect fewer than about 0.05% of the population (definitions differ slightly in the U.S. and the E.U.). However, some  7,000 different rare diseases affect 25-30 million Americans – for perspective, that’s about as many people as have asthma or diabetes. That means that individuals with rare diseases as an overall group are far more common than you might imagine. The dichotomy is that, since their specific diagnosis is unusual, finding these individuals in order to educate and engage them remains a challenge with multiple hurdles.

First, of course, is the necessity to remain HIPAA-compliant in every step of the process. From there, it can be helpful to begin with data about healthcare professionals (HCPs) in order to begin to see which providers are diagnosing and treating patients with the rare disease in question.

Prescribing behavior, specializations, and other HCP attributes can be useful in beginning to understand your rare-disease patient population – but they are only part of the puzzle.

Enlist a Data Analytics Partner
A data-analytics partner can help with tools and solutions that add de-identified patient data to the mix. That information helps us to create a digital “fingerprint” for our rare-disease patient, and can help us find others with similar digital fingerprints.

Sometimes, unexpected sources and types of data can help. For instance, in some cases, prescription information might prove to be less helpful than lab test data. We’re testing variations of different data sources to find newer and more precise ways of connecting and analyzing them to get clearer pictures of the people we’re hoping to communicate with.

In one case, Intouch Analytics sought to reach rare-disease patients with brand-awareness messaging, beyond contextual-only media, in a HIPAA-compliant manner. Our Media and Marketing Intelligence teams met this challenge by creating micro patient audience microsegments that could be tested and targeted programmatically. This targeting approach helped drive the overall programmatic media buy, which delivered the highest impression volume (89%) and site visits (90%) of all of the involved partners, and the most efficient cost-per-site-visit ($39 vs. $306 for endemic site).

Modern, Data-Driven Targeting Can Aid Marketers
A modern, data-driven targeting approach helps marketers in a variety of ways. Obviously, it helps media buys to be vastly more efficient and effective. It also helps inform our creative teams: When they’re able to gain deeper insights about patients with a rare disease, they’re better able to provide information that will help diagnose, treat and manage their conditions.

Have you “found” your patients as well as you could? It might be worth taking a closer look at a variety of data sources to find the “needles in the haystack” in order to try to identify more of them.

Author: Maria Hoheusle, Associate Director, Marketing Intelligence, Intouch Analytics
Reviewers: Wanda Cruz, SVP, Marketing Analytics; Ann Cave, SVP, Managing Director, Account Services; Machelle Henks, SVP, Strategic Planning