Social media has become an important aspect of healthcare information creation and sharing. Health data collected by analysis of online forums, blogs, videos, and direct networking sites minimize the Hawthorne effect frequently found in biomedical research.1 The Hawthorne effect occurs when patients who are asked to self-report experiences through survey or interview questions are influenced by the setting.1 This may cause them to report what they perceive as the expected opinion rather than their true opinion, confounding research outcomes.1 By using social media to investigate patient opinions, biomedical researchers can rapidly collect real-world data from a larger and more diverse population than found in traditional research methods and potentially minimize the Hawthorne effect.1
Using this approach in lung cancer research has the potential to advance treatment for this disease. Lung cancer is the most common cancer worldwide and is diagnosed in 2 million patients annually. Recent advances in lung cancer treatment have offered hope for prolonged survival, but the 5-year survival rate of 18.6% is much lower than many other cancers.2 Rodrigues and colleagues conducted an observational study using a social listening approach to investigate patient, caregiver, and healthcare professionals’ perceptions of lung cancer. The results of this study were presented at the European Society for Medical Oncology Congress 2021.
Data from open-access forums, blogs, and social networking sites were collected retrospectively from 14 European countries using social media aggregator tools after searching the terms “lung cancer” and “non-small cell lung cancer.” The majority (91%) of patients had late-stage lung cancer and were between the ages of 51 and 70 years. Automated algorithms and manual review were used to filter the data followed by random sampling to create the final data set from 1360 conversations. Patients and caregivers generated 42% of the conversations and healthcare professionals generated 14% of conversations. Healthcare professionals primarily used technical language, while patients and caregivers primarily used colloquial language in discussions. Lung cancer treatment was the most frequent discussion topic, with causes and diagnosis being the second and third most frequently discussed topics, respectively. Chemotherapy had the most negative perception, with 28% of sentiments being negative and 12% positive. Immunotherapy and targeted therapies had higher positive sentiments, with both having 47% positive sentiment. This was attributed to the perceptions of having longer survival outcomes and fewer side effects with use of these therapies. When clinical end point conversations were analyzed, prolonged survival was mentioned 47% of the time and overall survival was mentioned 30% of the time by both patients/caregivers and healthcare professionals. Analysis of treatment discontinuation conversations revealed exhaustion of treatment options, and intolerable side effects were the primary citations for discontinuation of treatment. Treatment changes were driven by relapse, metastatic disease, and treatment inefficacy.
Social listening can provide healthcare professionals and researchers with valuable insight and information concerning patients’ unmet needs to direct further research.
Rodrigues A, Chauhan J, Sagkriotis A, et al. Using social listening to understand stakeholder perceptions of the patient journey in lung cancer. Ann Oncol. 2021;32(suppl_5):S1025.
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