OBJECTIVES: The Mighty is a patient-led social platform of ~3.5M members with predominantly chronic, rare, and mental-health conditions. Patients provide RWE insights through a combination of surveys and online conversations, demonstrating online platforms as a patient-centric source of RWE. Here we exhibit the value of utilizing online platforms to better understand the lived experiences of patients with rheumatoid arthritis (RA), focusing on disease burden and patient-defined measures of success.

METHODS: From May 9 - May 20, 2022 we fielded 433 survey responses from RA patients, focusing on “top burdens” of disease. The Mighty expanded upon the survey findings using a social listening analysis. The Mighty derived RWE from relevant posts written by members who self-select as RA patients, using an iterative process of NLP, machine learning, and human linguistic analysis, in addition to on-site behavior trends. We analyzed a total of 87400 posts created between April 2018 - May 2020 authored by 7216 unique users.

RESULTS: Survey results identified finding an effective treatment plan as burdensome for RA patients, with 67% selecting this as a top challenge. Our social listening analysis found switching treatments to be a key contributor to this burden. Researchers determined the burden of switching is influenced by the amount of patient involvement in the decision-making process with their healthcare team. Patients involved in decision-making are 6 times more likely to express a positive emotion around switching (i.e., excitement, satisfaction, optimism, or acceptance) than those not involved. Furthermore, patients not involved in decisions are 14 times more likely to express a negative emotion around switching (i.e., disappointment, frustration, fear, anger).

CONCLUSIONS: Here we demonstrate that online platforms are uniquely positioned to understand disease burden and the patient-defined needs to reduce them through rapid, in-depth insights gathered from patient-reported data and on-site behavior.