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Why Social Media Listening Enhances Medical Affairs’ Understanding of Rare Disease Patients

Acceleration Point's Cushing's Syndrome poster study reveals how social listening surfaces rare disease patient experiences that traditional data sources miss.

#KOL Social Listening #Medical Affairs #Patient Social Listening
A physician shares a tablet with an older patient, echoing the patient dialogue that rare disease social listening surfaces for Medical Affairs.

Social media has reshaped how the public perceives, understands, and discusses health conditions. Rare diseases, however, often remain misunderstood and under-discussed in mainstream conversation. Patient social listening is the practice of monitoring and analyzing public conversations, often on social media, to understand how patients describe their experiences with a disease or condition. This article explains how patient social listening is helping close the rare disease information gap, using Acceleration Point's own research into Cushing's Syndrome as a case example.

Key Takeaways

  • Acceleration Point's patient social listening study focused on Cushing's Syndrome (CS), a rare disease with limited Real-World Analytics (RWA) data available.
  • The study was presented as a poster at ISPOR.
  • Key findings point to diagnostic difficulty, since CS symptoms often mirror other conditions, and to a shortage of treatments that address the underlying disease rather than just symptoms.
  • Kwello supports this kind of work through congress listening, patient listening, and its Social Monitoring platform.

What Does Acceleration Point's Social Listening Initiative Aim to Do?

Acceleration Point's patient social listening initiative was designed around four objectives:

  • Identifying conversations and trends: Monitoring social media conversations to surface emerging trends and discussions around rare diseases.
  • Understanding patient experiences: Listening directly to the perspectives and lived experiences of individuals managing rare diseases.
  • Supporting awareness campaigns and research efforts: Gathering insights that can inform targeted awareness campaigns, research initiatives, and advocacy efforts for rare disease communities.
  • Facilitating connections and collaboration: Creating connections between patients, caregivers, healthcare professionals, and relevant organizations to support collaboration within the rare disease community.

What Did the Cushing's Syndrome Study Find?

Acceleration Point focused its patient social listening study on Cushing's Syndrome (CS) and presented the findings as a poster at ISPOR in 2024. The study was driven by the scarcity of available data in the Real-World Analytics (RWA) landscape and a goal of understanding, directly, the perspectives of patients living with Cushing's Syndrome.

The findings point to significant challenges in identifying Cushing's Syndrome, largely because its symptoms often mirror other conditions. That difficulty is common across rare diseases: a Europe-wide patient survey published in the European Journal of Human Genetics found the average time to a rare disease diagnosis is close to five years. The analysis also found that treatment options for Cushing's Syndrome remain limited, with existing therapies focused primarily on managing symptoms rather than addressing the underlying disease.

Acceleration Point's patient social listening study has implications for improving access to proper care and reducing the burden of disease for patients. These insights inform conversations with patient advocates and help address knowledge gaps within the healthcare provider (HCP) community, supporting better understanding and management of Cushing's Syndrome.

Why Does Social Listening Matter for Rare Disease Understanding?

Social media is a source of direct patient insight that traditional data sources often miss, particularly for rare conditions where published research is limited. The scale of that gap is significant: more than 6,000 distinct rare diseases have been identified, and together they affect an estimated 300 million people worldwide, yet many individual conditions have very little published evidence behind them. Listening to patients directly, as Acceleration Point did in a first-in-class launch case, can surface experiences that structured datasets do not capture.

Kwello, Acceleration Point's platform, supports this kind of work through congress listening, patient listening, and Social Monitoring, drawing on conversations from healthcare professionals, scientific organizations and societies, patient advocacy groups, and other digital influencers. Connect with our team to learn how Kwello can support your KOL and patient insight efforts using social and digital media.

About Acceleration Point

Acceleration Point is a specialty provider of Medical Affairs and Medical Excellence technology and services. Our mission is to help Medical Affairs teams learn from top KOLs around the world. We are committed to improving the process of gathering, analyzing, and applying insights within the pharmaceutical industry, with the goal of ensuring that information supports patient care and organizational success. Acceleration Point is a global company with offices in Roanoke, Virginia and London, United Kingdom.

For more information, visit www.accelerationpoint.com.

FAQ

What is patient social listening? Patient social listening is the practice of monitoring and analyzing public conversations, often on social media, to understand how patients describe their experiences with a disease or condition.

Why is social listening useful for rare diseases specifically? Rare diseases often have limited published research and Real-World Analytics (RWA) data. Social listening gives Medical Affairs teams a direct view into patient experience where traditional data sources are thin.

Why are rare diseases often diagnosed late? Rare disease symptoms frequently mirror those of more common conditions, so patients may see several providers before receiving an accurate diagnosis. Across Europe, the average time to a rare disease diagnosis is close to five years.

What did Acceleration Point's Cushing's Syndrome study find? The study found that Cushing's Syndrome is difficult to diagnose because its symptoms mirror other conditions, and that current treatment options mainly manage symptoms rather than the underlying disease.

How does Kwello support patient and KOL social listening? Kwello offers congress listening, patient listening, and a Social Monitoring platform that track conversations from healthcare professionals, scientific organizations, patient advocacy groups, and other digital influencers.

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