Using Self-Reported Patient Experiences to Understand Patient Burden: Learnings from Digital Patient Communities in Ankylosing Spondylitis.

Introduction: Online communities contain a wealth of information containing unsolicited patient experiences that may go beyond what is captured by guided surveys or patient-reported outcome (PRO) instruments used in clinical settings. This study described patient experiences reported online to better understand the day-to-day disease burden of ankylosing spondylitis (AS).

Methods: Unguided, English-language patient narratives reported between January 2010 and May 2016 were collected from 52 online sources (e.

Evaluation of Self-reported Patient Experiences: Insights from Digital Patient Communities in Psoriatic Arthritis.

Objective: To evaluate the types of experiences and treatment access challenges of patients with psoriatic arthritis (PsA) using self-reported online narratives.

Methods: English-language patient narratives reported between January 2010 and May 2016 were collected from 31 online sources (general health social networking sites, disease-focused patient forums, treatment reviews, general health forums, mainstream social media sites) for analysis of functional impairment and 40 online sources for assessment of barriers to treatment. Using natural language processing and manual curation, patient-reported experiences were categorized into 6 high-level concepts of functional impairment [social, physical, emotional, cognitive, role activity (SPEC-R), and general] and 6 categories to determine barriers to treatment access (coverage ineligibility, out-of-pocket cost, issues with assistance programs, clinical ineligibility, formulary placement/sequence, doctor guidance).