Online Discussions on Traditional, Complementary, and Integrative Medicine among Patients with Cancer: A Data-Mining Study of Health Forums and Social Media Platforms (Preprint)

BACKGROUND Patients with cancer increasingly use forums and social media platforms to access health information and share their experiences, particularly in the use of traditional, complementary, and integrative medicine (TCIM). OBJECTIVE This study leveraged multiple forums and social media platforms to explore patients’ use, interest, and perception regarding TCIM for cancer care. METHODS Posts (in English) related to TCIM were collected from Facebook, Twitter, Reddit and 16 health forums from their inception till February 2022. Both manual assessment and natural language processing were used. Descriptive analyses were performed to explore the most commonly discussed TCIM modalities. Themes were identified from posts of positive and negative sentiments. TCIM modalities that are emerging or have been recommended in guidelines were identified a priori. Exploratory topic-modeling analyses were conducted to investigate patients’ perceptions of these modalities. RESULTS In the 1,620,755 posts available, pain, anxiety/depression, and insomnia were commonly discussed. Cannabis was among the most commonly discussed modalities for pain, nausea/vomiting, and insomnia. Seven positive and seven negative themes were identified. The positive themes included TCIM making symptoms manageable and reducing the need for medication, and the belief that TCIM and conventional treatments are not mutually exclusive. Conversely, TCIM was viewed as leading to the patients’ refusal of conventional treatments or delays in diagnosis and treatment. Exploratory analyses showed that TCIM recommendations were well discussed among patients, but these modalities were also used for many other indications. Other notable topics included concerns about the legalization of cannabis; techniques for acupressure; and positive experiences of meditation. CONCLUSIONS By using machine-learning techniques, social media and health forums provide a valuable resource for patient-generated data regarding the pattern of use and patients’ perceptions of TCIM. Such information will help clarify patients’ needs and concerns, and provide directions for research on integrating TCIM into cancer care. CLINICALTRIAL Not applicable.