Have you ever wondered how social media has reshaped our perception of diseases? In today’s interconnected world, the influence of social platforms extends far beyond mere communication, penetrating deep into how we perceive and understand various health conditions. Yet, amidst the vast digital landscape, rare diseases often remain shrouded in misunderstanding and neglect. In this exploration, we uncover the impact of social media on our perception of diseases, particularly rare conditions.
Our social media listening initiative was designed with four primary objectives:
- Identifying Conversations and Trends: By monitoring social media conversations, we aim to uncover emerging trends and discussions surrounding rare diseases.
- Understanding Patient Experiences: Through deep listening, we seek to understand the unique perspectives and lived experiences of individuals grappling with rare diseases firsthand.
- Supporting Awareness Campaigns and Research Efforts: Our goal is to gather insights that can inform targeted awareness campaigns, drive research initiatives, and support advocacy efforts on behalf of rare disease communities.
- Facilitating Connections and Collaboration: We endeavor to create bridges between patients, caregivers, healthcare professionals, and relevant organizations, fostering collaboration and support networks within the rare disease community.
We focused our patient social listening study on Cushing’s Syndrome (CS) and presented our poster at ISPOR earlier this month. This publication was driven by the scarcity of available data in the Real-World Analytics (RWA) landscape and our desire to gain a direct understanding of the perspectives of patients living with Cushing’s Syndrome.
Key insights gleaned from our study shed light on the significant challenges faced by individuals in identifying Cushing’s Syndrome, exacerbated by its symptomatology often mirroring other conditions. Furthermore, our analysis underscored the limited availability of effective therapies for Cushing’s Syndrome, with existing treatments primarily focusing on symptom management rather than addressing the underlying disease.
Our patient social listening study has profound implications for improving access to proper care and alleviating the burden of disease. With these insights, we not only engage in conversations with patient advocates but also strive to address knowledge gaps within the healthcare provider community (HCP), enhancing their understanding and management of Cushing’s Syndrome.
As we continue our exploration of the influence of social media on our perception of diseases, particularly rare conditions, one thing becomes abundantly clear: the digital realm is not merely a platform for communication, but a powerful source for patient insights.
At Kwello, we offer a unique opportunity to delve into the conversations led by healthcare professionals, scientific organizations and societies, patient advocacy groups, and other digital influencers through our social analytics offerings: congress listening and patient listening and our Kwello Social Monitoring platform. To learn how Kwello can support your KOL and patient insight efforts using social and digital media, schedule a meeting with our team.
About Acceleration Point
Acceleration Point is a leading provider of insight solutions and services for Medical Affairs teams. Our mission is to help Medical Affairs teams learn from top KOLs around the world. We are committed to revolutionizing the process of gathering, analyzing, and leveraging insights within the pharmaceutical industry, ensuring that every piece of information serves to advance patient care and organizational success. Acceleration Point is a global company with offices in Roanoke, Virginia and London, United Kingdom.
For more information, please visit www.accelerationpoint.com.
