Perspectives and Experiences of Patients With Thyroid Cancer at a Global Level: Retrospective Descriptive Study of Twitter Data.

Background: Twitter has become a popular platform for individuals to broadcast their daily experiences and opinions on a wide range of topics and emotions. Tweets from patients with cancer could offer insights into their needs. However, limited research has been conducted using Twitter data to understand the needs of patients with cancer despite the substantial amount of health-related data posted on the platform daily.

Objective: This study aimed to uncover the potential of using Twitter data to understand the perspectives and experiences of patients with thyroid cancer at a global level.

Methods:  This retrospective descriptive study collected tweets relevant to thyroid cancer in 2020 using the Twitter scraping tool. Only English-language tweets were included, and data preprocessing was performed to remove irrelevant tweets, duplicates, and retweets. Both tweets and Twitter users were manually classified into various groups based on the content. Each tweet underwent sentiment analysis and was classified as either positive, neutral, or negative.

Results: A total of 13,135 tweets related to thyroid cancer were analyzed. The authors of the tweets included patients with thyroid cancer (3225 tweets, 24.6%), patient's families and friends (2449 tweets, 18.6%), medical journals and media (1733 tweets, 13.2%), health care professionals (1093 tweets, 8.3%), and medical health organizations (940 tweets, 7.2%), respectively. The most discussed topics related to living with cancer (3650 tweets, 27.8%), treatment (2891 tweets, 22%), diagnosis (1613 tweets, 12.3%), risk factors and prevention (1137 tweets, 8.7%), and research (953 tweets, 7.3%). An average of 36 tweets pertaining to thyroid cancer were posted daily. Notably, the release of a film addressing thyroid cancer and the public disclosure of a news reporter's personal diagnosis of thyroid cancer resulted in a significant escalation in the volume of tweets. From the sentiment analysis, 53.5% (7025/13,135) of tweets were classified as neutral statements and 32.7% (4299/13,135) of tweets expressed negative emotions. Tweets from patients with thyroid cancer had the highest proportion of negative emotion (1385/3225 tweets, 42.9%), particularly when discussing symptoms.

Conclusions:  This study provides new insights on using Twitter data as a valuable data source to understand the experiences of patients with thyroid cancer. Twitter may provide an opportunity to improve patient and physician engagement or apply as a potential research data source.