Patient identification: moving beyond ‘knocking on doors’

Identifying patients has always been a traditional challenge for companies focusing on rare diseases. Early pioneers in the rare disease space, such as Shire or Genzyme, had dedicated ‘patient finders’ who tirelessly navigated the healthcare professional (HCP) landscape, reaching out to general practitioners and actively seeking potential patients. However, in recent years, advancements in technology and social media have provided new and more cost-effective options for patient identification.

Nowadays, rare disease companies can employ social media campaigns and engage with online communities to reach potential patients. Artificial intelligence can be leveraged to develop patient-finding algorithms that can identify individuals with rare diseases, learning from the characteristics of confirmed cases. Collaborating with health systems, particularly in the United States, offers an avenue to integrate patient finding algorithms into medical practice, leveraging electronic medical record (EMR) data to develop digital biomarkers.

While ‘knocking on doors’ may still provide an option, social media and tech-enabled approaches have opened up opportunities to accelerate patient identification in a faster and more efficient way.