C051 Understanding the Lived Experience of Patients by Mining Online Health Boards

Bessant, M. Abdollahyan, F. Smeraldi, Abstract and Poster, Value in Health 26 (6), S23-S24, June 2023

Abstract

Objectives:

Online health boards (OHBs) are web-based forums where patients post publicly about their conditions. We evaluated the extent to which OHB posts could be used to generate meaningful insights into the lived experience of patients. Specifically, we sought to (a) capture patient reactions to the Covid-19 pandemic, (b) determine pathways to diagnosis of ANCA-associated vasculitis (AAV) and (c) develop clinical outcome assessments (COAs) for congestive heart failure (CHF).

Methods:

For each use case, a keyword-based search was used to retrieve relevant English language posts from multiple OHBs. A machine learning approach removed all posts except those where a patient was writing about themselves or someone in their care. Computer-assisted coding was applied to these posts and numerical analysis used to extract insights from the coding. Where possible, our findings were compared to those obtained using traditional methods.

Results:

Relevant posts were obtained from 53,134 users for the Covid study, 271 patients for the CHF work and 59 AAV patients. These proved sufficient to reveal meaningful insights across all three studies. For example, it was possible to rank lifestyle impacts of disease (limitations on exercise ranked highest, cited by 47% of CHF patients), reconstruct pathways to diagnosis (average time to AAV diagnosis found to be seven years) and track patient concerns during the onset of the Covid-19 pandemic. Findings were broadly comparable with those reported elsewhere.
CONCLUSIONS:

Conclusions:

Mining OHBs offers an alternative methodology for capturing the patient experience across a range of applications. Its strengths are the immediacy with which insights can be acquired, the size of cohorts that can be studied and the ability to retrospectively perform longitudinal studies. However, this approach is limited by the inability to probe beyond initial post content, the reliance on patients to proactively share their experience, and the inability to evidence their diagnosis.

(online version - poster)

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