A New Method to Extract Health-Related Quality of Life Data From Social Media Testimonies: Algorithm Development and Validation

Abstract

Background Monitoring social media has been shown to be a useful means to capture patients’ opinions and feelings about medical issues, ranging from diseases to treatments. Health-related quality of life (HRQoL) is a useful indicator of overall patients’ health, which can be captured online. Objective This study aimed to describe a social media listening algorithm able to detect the impact of diseases or treatments on specific dimensions of HRQoL based on posts written by patients in social media and forums. Methods Using a web crawler, 19 forums in France were harvested, and messages related to patients’ experience with disease or treatment were specifically collected. The SF-36 (Short Form Health Survey) and EQ-5D (Euro Quality of Life 5 Dimensions) HRQoL surveys were mixed and adapted for a tailored social media listening system. This was carried out to better capture the variety of expression on social media, resulting in 5 dimensions of the HRQoL, which are physical, psychological, activity-based, social, and financial. Models were trained using cross-validation and hyperparameter optimization. Oversampling was used to increase the infrequent dimension: after annotation, SMOTE (synthetic minority oversampling technique) was used to balance the proportions of the dimensions among messages. Results The training set was composed of 1399 messages, randomly taken from a batch of 20,000 health-related messages coming from forums. The algorithm was able to detect a general impact on HRQoL (sensitivity of 0.83 and specificity of 0.74), a physical impact (0.67 and 0.76), a psychic impact (0.82 and 0.60), an activity-related impact (0.73 and 0.78), a relational impact (0.73 and 0.70), and a financial impact (0.79 and 0.74). Conclusions The development of an innovative method to extract health data from social media as real time assessment of patients’ HRQoL is useful to a patient-centered medical care. As a source of real-world data, social media provide a complementary point of view to understand patients’ concerns and unmet needs, as well as shedding light on how diseases and treatments can be a burden in their daily lives.