In the age of digital transformation, social media usage has surged considerably, providing pharmaceutical companies with a rich source of unfiltered patient experiences and real-world insights.

The number of social media users worldwide has more than doubled, rising from approximately 2.07 billion in 2015 to around 5.16 billion by 2025. While younger generations remain the most active users, older age groups have increasingly adopted social media platforms in the last few years, often participating in shared online communities focused on healthcare challenges.

Conversations around health and healthcare on social media have become detailed due to enthusiastic participation by patients and doctors online. They share their experiences and opinions spontaneously, providing unfiltered and authentic insights into their health journeys. This unbiased, real-time, unsolicited patient voice on social media is becoming one of the most promising applications of social media listening in patient-reported outcomes research.

Benefits of Social Media Listening to Uncover Patient-Reported Outcomes

Unstructured social media data from patients and their caregivers is invaluable for generating insights about patient-reported health outcomes, representing real-world experiences that may be unavailable to most clinicians. Patients have a richer understanding of the wide range of symptoms they experience and use specific terms and phrases to express their perceived knowledge of the condition. They present their situation to peers on social forums to seek further information and to find out if others are facing similar issues.

Analysing this patient-reported data allows social media analytics experts to capture patients' responses in their own language. Social media listening aids in understanding the emergence of new symptoms, tracks the progression of diseases, and provides a direct source of insight into the impact of treatments.

Social Listening Provides Rich Unfiltered Insights

Unlike traditional market research surveys that require probing patients with predefined questionnaires, conversations on social platforms include unsolicited experiences of patients, their sentiments, concerns, and unmet needs. They provide a possibility to understand patients’ experiences in the real world. In addition, social listening enables access to a vast community of patients from across social contexts, which assists in gathering data from a variety of demographics, enhancing the generalizability of social listening findings.

Social listening provides avenues to gain real-time insights, unfiltered patient experiences, and enhanced reach and access to a vast and diverse patient population.

Applications of Social Listening in PRO Research – IQVIA Use Cases

In the last few years, IQVIA Social Media Intelligence workstream has collaborated with clients to conduct in-depth qualitative research to derive patient-reported outcomes from social media data that was then integrated with broader PRO studies.

Some of the applications of our work in this area include:

1. Understanding disease burden to plan HCP education: In a specific case, a major pharmaceutical company was developing a drug for Metabolic Dysfunction-Associated Steatohepatitis (MASH). While the team had robust clinical research results, they sought to understand the patient voice through real-world data. Qualitative analysis of patient conversations revealed the burden of symptoms and the impact of the disease on quality of life. The disease journey highlighted that the transition between disease stages increased symptom severity, with some new symptoms being reported. These insights enabled the pharmaceutical company to plan healthcare professional (HCP) education initiatives, ensuring that doctors develop a deeper understanding of patient experiences for improved patient interaction and treatment decision-making.
2. Validation of PRO Measures for New Drug/Label Expansion: A major pharmaceutical company was planning a label expansion for its narcolepsy and idiopathic insomnia drug, focusing on improving the impact of the disease on cognition, fatigue, and day-to-day activities. They wanted to gather insights from unbiased social media patient voice to ensure that Patient Reported Outcome (PRO) instruments adequately addressed key aspects of health-related quality of life (HRQoL) important to patients. An in-depth social media research campaign was conducted, and it was observed that patients shared novel symptoms with their online peers, highlighting the impact on their emotional well-being, education, employment, social life, and physical relationships with partners. These insights were critical, providing key insight which informed the overarching PRO study that was conducted.
3. Development of De Novo Patient Reported Outcome Measure (PROM): In this case, a major pharmaceutical company was planning the development of a de novo Patient Reported Outcome Measure (PROM) for focal onset seizures. They aimed to include insights from social media research and integrate them with other data sources to consolidate their findings and prepare a foundation for the development of the PROM instrument. IQVIA conducted social listening to analyze social media conversation data related to focal onset seizures generated by patients on online forums. The research uncovered rich insights related to non-seizure symptoms impacting cognition, behavior, and emotions before or after focal onset seizures. The analysis also covered the impact of these symptoms on patients' health-related quality of life (HRQoL) and their concerns. Insights from this research were combined with a targeted literature review to develop new findings related to non-seizure symptoms associated with focal onset seizures. The combined research also aided in developing new patient surveys to confirm the concept and develop the de novo PRO(s) to measure non-seizure outcomes in patients with focal onset seizures. This PRO data was intended to be used in the label for their brand under trial (Phase 3) for label expansion.
4. Effective Communication Strategies for Public Health Crises: By monitoring social media conversations, governments, public health organizations, and pharmaceutical companies can identify public concerns, detect potential misinformation, and tailor effective communication strategies to manage epidemics and other public health crises. During the onset of the COVID-19 pandemic, scientific knowledge about the disease evolved over time, but significant uncertainty remained regarding its definition, expected clinical course, and impact on daily life. Analysis of patient discussions on social media helped define the most commonly occurring symptoms. Social media research also helped identify novel symptoms and conditions such as pain and infection not previously recognized and map the patient journey of those hospitalized due to acute respiratory distress syndrome from COVID-19. Additionally, upon specific company requests, we monitored online sentiment towards COVID-19 vaccination and patient experiences shared in discussions with peers.

Challenges and Considerations of Social Listening

While social media listening offers numerous benefits, it also comes with challenges:

Data Privacy concerns: Data privacy is a critical issue while conducting social listening, especially in healthcare. Ensuring compliance with social media guidelines for data usage and the ethical handling of social media data is paramount. Understanding data privacy regulations and the consequences of misusing individual data generated on social media is crucial.

Data Quality Issues: Social media data is unstructured and often contains irrelevant posts, spam, and fake accounts, making it extremely challenging to extract accurate and high-quality data. Ensuring reliability requires thorough data contextualization, validation, filtering, and cleaning. Utilizing advanced social listening tools, combined with expert validation, is one of the best solutions to mitigate data quality issues.

Big Data Processing: Healthcare data is generated in massive volumes across social media platforms, making scalability a significant challenge. Efficiently harnessing this vast amount of data to generate valuable insights requires robust infrastructure, optimized algorithms, and the expertise of life sciences professionals.

Incomplete and dispassionate data: Social media data may not accurately represent the entire population, as a significant portion may not actively participate on these platforms. The use of informal language, colloquial expressions, varied formats, and regional languages can complicate automated analysis.

These challenges are, however, manageable when domain expertise is supported by skilful use of advanced NLP tools and able linguists who can help understand the nuances of patients’ expressions. Analysis of the patients’ contexts, the socio-cultural fabric of different regions, the tonality of posts, and analysis of various formats of expression can help uncover valuable directional insights from social data.

A New Source of Patient Understanding

Social Listening is paving the way for integrated research in patient reported outcomes by presenting a novel source of patient experiences. The real-time, unsolicited patient voice can help healthcare professionals gain a deeper understanding of patient experiences, track disease progression, and assess treatment impacts, among other uses.

Even with some challenges around data privacy, maintaining data quality, processing large volumes of information, and incomplete representation of the population, social listening’s rich, authentic, and diverse nature delivers highly specific patient-centric insights that are helping healthcare take giant leaps forward.