Patient Social Listening within Rare Disease with Shruthi Menon and Akansha Kumar

Patient social media data is increasingly recognized as a source of real-world insight -- but using it rigorously, ethically, and at scale requires both methodology and intent. Rare disease contexts make this work especially meaningful, where patient communities are small, vocal, and often underserved by traditional research approaches.

In this episode of OnPoint: The Medical Excellence Podcast, Scott Thompson speaks with Shruthi Menon and Akansha Kumar, both members of Acceleration Point's Social Listening and Analytics team. Shruthi and Akansha share findings from their ISPOR poster presentation on Cushing's Syndrome, walking through how social listening was applied to map patient journeys in a rare disease setting -- from methodology and data sources to limitations, ethical considerations, and practical applications for Medical Affairs teams. If you're exploring how unstructured patient data can inform scientific strategy, this conversation is a strong place to start.

Key Takeaways:

• Social listening surfaces patient experiences that traditional research misses -- In rare disease, where clinical trial populations are small and patient registries are limited, social media communities can provide a window into lived experience, unmet needs, and disease burden that structured data sources don't capture.
• Methodology matters -- Rigorous social listening requires defined data sources, clear query parameters, noise filtering, and a structured approach to coding and interpretation. Shruthi and Akansha walk through the process behind their ISPOR work on Cushing's Syndrome.
• Rare disease amplifies both the opportunity and the ethical stakes -- Patient communities in rare disease are often tightly knit and highly identifiable. Responsible use of social listening in these contexts requires careful attention to privacy, data handling, and the potential for re-identification.
• Limitations are part of the picture -- Social listening data reflects people who are online, engaged, and willing to share. Understanding what this population does and does not represent is critical to drawing defensible conclusions.
• Applications extend beyond insight generation -- Medical Affairs teams can use patient social listening to inform medical education priorities, identify evidence gaps, and sharpen the questions brought to advisory boards and HCP conversations.

About Our Guests

Shruthi Menon is a member of Acceleration Point's Social Listening and Analytics team, where she focuses on applying social media data to generate patient and scientific insights. Her work on Cushing's Syndrome was presented at ISPOR, demonstrating methodological approaches to mapping rare disease patient journeys through social listening.

Connect with Shruthi on LinkedIn: https://www.linkedin.com/in/shruthi-menon-288b3b97

Akansha Kumar, PharmD, MSBA is a member of Acceleration Point's Social Listening and Analytics team. Her background bridges pharmacy and business analytics, supporting the development of rigorous frameworks for social listening research applied to Medical Affairs.

Connect with Akansha on LinkedIn: https://www.linkedin.com/in/akansha-kumar-pharmd-msba-b1417911a

About OnPoint: The Medical Excellence Podcast

OnPoint: The Medical Excellence Podcast delivers insightful conversations on the most pressing issues facing top Medical Affairs professionals. Listen to stay ahead of industry trends and be inspired by leaders shaping the future of Medical Affairs.

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