In an age where technology interconnects us in unprecedented ways, the healthcare landscape is undergoing a transformative shift. This is particularly significant in the realm of rare diseases, conditions that, despite their rarity, collectively affect a considerable portion of the global population. Leveraging social insights through patient-centric social listening has emerged as a game-changing approach in understanding and addressing the complexities associated with rare diseases. This blog post explores the critical role of social insights in rare disease care and recommends downloading our comprehensive whitepaper for an in-depth understanding.
Understanding Rare Diseases
Rare diseases, by definition, are conditions that affect a small percentage of the population. In the European Union, a disease is considered rare if it affects fewer than 50 per 100,000 people, while in the United States, it is a condition affecting between 25 and 30 million Americans, approximately 1 in 10 people. Globally, it is estimated that at least 4% of the population will be affected by a rare condition at some point in their lives, translating to around 300 million individuals worldwide. With over 8,000 identified rare diseases, the need for effective and innovative approaches to address the unique challenges faced by this community is more pressing than ever.
The Role of Social Listening
Social listening involves monitoring and analysing social media conversations to gain insights into patient and caregiver experiences, needs and challenges. This patient-centric research method offers unparalleled opportunities for healthcare providers, pharmaceutical companies and other stakeholders to tap into real-time data, fostering a deeper understanding of the rare disease landscape.
Key Benefits of Social Listening in Rare Diseases
- Mapping the Patient Journey: Social listening helps in understanding the various stages and emotional experiences of patients from symptom onset to diagnosis and management. By analysing social media conversations, we can map out the patient journey, identifying key pain points and areas requiring intervention.
- Identifying Unmet Needs: It enables the discovery of gaps in current treatment strategies and areas where patients and caregivers require additional support. This can lead to the development of targeted therapies and support mechanisms that address these unmet needs.
- Guiding Drug Development: Insights gained from social listening can inform the development of orphan drugs by providing a clearer understanding of patient needs and preferences. This can lead to more effective and patient-centric drug development processes.
- Enhancing Product Positioning: Social data can be utilised to improve drug launch strategies and increase market reach. By understanding the conversations and sentiments surrounding a drug, pharmaceutical companies can tailor their marketing efforts to better resonate with the target audience.
- Educating Healthcare Providers: Increasing awareness and understanding of rare diseases among healthcare professionals is crucial. Social listening can highlight knowledge gaps and inform educational initiatives that enhance the competency of healthcare providers in diagnosing and managing rare diseases.
Case Study: Amyloidosis Patient Journey
One notable example of the value of social listening is our case study on AL Amyloidosis, a rare disease characterised by abnormal protein deposits in tissues and organs. Our team partnered with a major pharmaceutical brand to gain a comprehensive understanding of the patient journey from the perspective of those affected. By harvesting mentions of Amyloidosis across social media platforms in the US and Europe and manually coding a representative sample of conversations, we uncovered in-depth insights into emotions, topics, perceptions and behaviours.
Methodology and Findings
The study spanned a 12-month period, capturing conversations in multiple languages from the US, UK, France, Germany, Spain and Italy. Our in-country analysts identified differences and similarities in the disease journey by market and language, allowing the client to tailor their solutions and strategies to each specific country.
Key findings included:
- Stem Cell Transplant (SCT) Conversation: Limited to the US and the UK, with many patients in the US receiving the transplant while few in the UK had access.
- Treatment Options: Chemotherapy was the major treatment discussed, with specific mentions in the US, UK and France. Germany, Italy and Spain had no mentions of specific treatments.
- Clinical Trials: Participation was rare, with few mentions in the US and France, including a clinical trial (NEO001) which was terminated due to lack of results.
The client received a detailed patient journey map summarising the findings, opportunities and emotions at each stage. This allowed them to develop tailored information and support solutions at both global and local levels, benefiting patients, caregivers and healthcare providers.
For a detailed look at this case study, click here.
Overcoming Challenges in Orphan Drug Development
The development of orphan drugs for rare diseases presents distinctive challenges, such as recruiting patients for clinical trials and identifying validated outcome measures. Social listening can address these challenges by providing detailed insights into the disease process, patient demographics and treatment experiences. For example, researchers used social media data to gather information about Thygeson’s superficial punctate keratitis, characterising patient journeys and treatment options. Such insights are invaluable in guiding drug development and designing effective clinical trials.
Enhancing Healthcare Provider Awareness
One of the biggest hurdles in rare disease care is the lack of awareness among healthcare providers. Exploratory surveys have shown that less than one-third of physicians receive training in rare diseases during their medical education. By leveraging social listening tools, pharmaceutical companies can gauge healthcare provider awareness and actively provide educational content to bridge knowledge gaps. For instance, our analysis of social media conversations for Lymbal stem cell deficiency and Lysosomal storage disease highlighted the need for increased disease awareness, leading to improved stakeholder engagement and education initiatives.
Maximising Patient Reach
Effective marketing of orphan drugs is crucial in reaching as many patients as possible. Social listening generates insights that can inform successful drug launch strategies and improve market reach. It also helps in identifying and establishing relationships with digital opinion leaders and patient advocacy groups, which are essential for effective product positioning. Additionally, social media platforms offer a valuable source of adverse event reporting, providing opportunities to enhance drug safety profiles and patient trust.
Expertise and Collaboration
Drawing meaningful insights from social listening requires both technical and industry expertise. Many pharmaceutical companies may not have the necessary in-house capabilities, making collaboration with third-party experts essential. At Convosphere, our deep understanding of the rare disease landscape combined with our expertise in social listening positions us perfectly to guide your social listening efforts. We offer tailored solutions to help you leverage social and online data effectively, identify key patient and caregiver needs and develop impactful initiatives that enhance patient care and stakeholder engagement.
Crafting a Social Listening Strategy That Is Both Impactful and Realistic
The journey to improving rare disease care begins with recognising the critical role that social listening can play. By harnessing social media conversations, we can uncover valuable insights that drive patient-centricity, map the patient journey, identify unmet needs and guide orphan drug development. Crafting a social listening strategy that is both impactful and realistic allows organisations to gather meaningful data, improve patient outcomes and foster better healthcare provider awareness.
Download Our Whitepaper
For a comprehensive understanding of how social listening can transform rare disease care, we invite you to download our whitepaper, The Critical Role of Social Insights for Rare Diseases. This whitepaper delves into the intricacies of using social data to enhance patient care, guide drug development and inform healthcare providers.
Download now to unlock the full potential of social insights in rare disease therapy and take the first step towards transforming the rare disease landscape.
To request more information or schedule a free consultation with our team of pharma and healthcare social listening experts, contact us today.
📧 info@convosphere.com | UK 📞+44 (0) 203 858 0235 | US 📞+1 332 600 1419
