Deriving Meaningful Aspects of Health Related to Physical Activity in Chronic Disease: Concept Elicitation Using Machine Learning–Assisted Coding of Online Patient Conversations

Byrom, C, Bessant, F. Smeraldi, M. Abdollahyan, Y. Bridges, M. Chowdhury, A. Tahsin, in Value in Health, vol 26, issue 7, pp 1057-1066, July 2023

Abstract

Objectives: Clinical outcome assessment (COA) developers must ensure that measures assess aspects of health that are
meaningful to the target patient population. Although the methodology for doing this is well understood for certain COAs,
such as patient-reported outcome measures, there are fewer examples of this practice in the development of digital
endpoints using mobile sensor technology such as physical activity monitors. This study explored the utility of social
media data, specifically, posts on online health boards, in understanding meaningful aspects of health related to physical
activity in 3 different chronic diseases: fibromyalgia, chronic obstructive pulmonary disease, and chronic heart failure.

Methods: We used machine learning and manual coding to summarize the content of posts extracted from 4 online health
boards. Where available, patient age and sex were retrieved from post content or user profiles. We utilized analytical ap-
proaches to assess the robustness of findings to differences in the characteristics of online samples compared to the true
patient population. Finally, we assessed concept saturation by measuring the convergence of autocorrelations.

Results: We identify a number of aspects of health described as important by patients in our samples, and summarize these
into concepts for measurement. For chronic heart failure, these included purposeful walking duration and speed, fatigue,
difficulty going upstairs, standing, and aspects of physical exercise. Overall and age-adjusted results did not differ
considerably for each disease group.

Conclusions: This study illustrates the potential of performing concept elicitation research using social media data, which may
provide valuable insight to inform COA development.

Keywords: concept elicitation, electronic clinical outcome assessment, endpoint development, machine learning, physical
activity, social media

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