OBJECTIVES: Understanding patient-centered concerns can aid clinicians and manufacturers in the development of tools that assess patient experience and improve care. The objective was to determine the feasibility of utilizing social media to generate insights on patient experience around treatment, quality of life, and burden of illness for a sample rare disease.

METHODS: We developed a prototype tool that uses data from the cystic fibrosis subreddit /r/CysticFibrosis on Reddit.com. Discussion threads ("posts," in Reddit terminology) from July to December 2021 were reviewed and tagged as relevant if they contained discussion points of potential relevance to clinicians or manufacturers. Individual statements within threads were then manually labelled to one of four main categories (Patient Journey, Treatment Effect, Treatment Switching, and Life Milestones). Within Patient Journey, threads were subcategorized into Psychosocial Impact of Disease, Disease Burden, and Symptoms. Treatment Effects were labeled as Positive, Negative, or Neutral. Reasons for Treatment Switching were captured. Milestones were further categorized by type of event.

RESULTS: 57 threads from the CysticFibrosis subreddit were tagged over the 6 month period, of which 31 were deemed relevant. 103 comments had at least one label, with 117 labels being applied (51 Patient Journey, 39 Treatment Effect, 24 Milestones, 1 Treatment Switching, 2 Other). Within the Patient Journey category, the psychosocial impact of disease (N=22), disease burden (N=14), symptoms (N=11), and other (N=2) were mentioned. Within Treatment Effects, 15 were Positive, 21 were Negative, and 2 were Neutral. Trikafta (N=23), Kaftrio (N=1), Kalydeco (N=1), and Orkambi (N=2) were mentioned. Milestones included going to college (N=4), having kids (N=3), marriage (N=2), career (N=11), advanced degree (N=1) and other (N=3).

CONCLUSION: The results of the prototype demonstrated that social media hold considerable potential for obtaining real-time, treatment-level insight into patient experiences that may not be readily identifiable through traditional research methods.