JMIR Publications

ABSTRACT

Background:

Social media provide a window onto the circulation of ideas in everyday folk psychiatry, revealing the themes issues discussed both by the general public and by various scientific communities.

Objective:

This study aims to explore the trends in health information about Autism Spectrum Disorders (ASD) exchanged within popular and scientific communities through the systematic semantic exploration of big data gathered from Twitter and PubMed.

Methods:

First, we conducted a natural language processing by text-mining analysis and an unsupervised (machine learning) methodology of topic modeling with a sample of the last 10,000 tweets in English posted with the term #autism (January 2021). We built a network of words in order to visualize the main dimensions representing these data. Second, we performed precisely the same analyzes with all the articles using the term “autism” on all the PubMed database without time restriction. Lastly, we rigorously compare the results of the two databases.

Results:

We retrieved 121,556 terms related to autism on 10,000 tweets and 5.7x109 terms on 57,121 biomedical scientific articles. The four main dimensions extracted from Twitter were: Integration and Social Support; Understanding and Mental Health; Child Welfare; and Daily Challenges and Difficulties. The four main dimensions extracted from PubMed were: Diagnostic and Skills; Research Challenges; Clinical and Therapeutical Challenges; and Neuropsychology and Behavior.

Conclusions:

This study provides, to our knowledge, the first systematic and rigorous comparison between two corpora of interests, in terms of lay representations and scientific research, in the face of the significant increase in information available on the ASD and of the difficulty to connect fragments of knowledge from the general population. The results suggest the importance of knowledge mobilization and exchange to better align research priorities with personal concerns and to address dimensions of well-being, adaptation and resilience. Health-care professionals and researchers can use these dimensions as a framework in their consultations to engage in discussions on issues that matter to patients and develop clinical approaches and research policies in line with these interests. Finally, our study can inform policymakers on the health and social needs and concerns of patients with autism and their caregivers, especially to define health indicators based on important issues for patients.