Generating patient insights in chronic obstructive pulmonary disease (COPD) with social media listening study

Background: Online forums are commonly used by patients to share disease information, grievances and for seeking mutual support. However, social media analysis has seldom been applied to evaluate patients’ perspective on COPD. Aim: To use social media data for understanding the patients’ perspective on COPD with respect to symptoms, unmet needs, and impact on their health-related quality of life (HRQoL). Methods: A social media data aggregator tool (Sales Force Studio®) was used to download relevant records posted between July 2016 and Jan 2018 using predefined keywords. Data sources were forums, blogs, Twitter and newswires. Post data anonymization, text algorithms and manual curation techniques were used to analyse and describe the impact of COPD symptoms on patient’s HRQoL. Results: 695 unique patient records were considered for the analysis. Patients’ discussions were primarily on symptoms, diagnosis, treatments and HRQoL. Based on 524 unique symptoms’ mentions derived from 284 unique records, the most commonly reported symptoms were cough (25%), mucous (23%), and shortness of breath (23%). These symptoms impacted patients’ HRQoL by affecting their sleep, mobility, work, inducing panic attacks and emotional wellbeing. Key unmet needs stated by patients were underestimation of initial symptoms, delayed diagnosis and lack of effective treatments. Conclusions: Social media sourced data (unfiltered and uninfluenced) can generate useful insights on patients’ experiences with COPD and identify unmet needs. This can inform decision-making in early drug development and guide discussions with regulatory bodies on trial designs and inclusion of relevant endpoints.