OBJECTIVES: To understand evolving trends in social media on dry eye disease (DED) and generate valuable insights on patients’ perceptions of disease burden, diagnosis, treatment, unmet needs and quality of life (QoL).

METHODS: Data for the time period (Dec 2016 – Feb 2017) was downloaded through social media data aggregator using MeSH terms based on predefined search criteria. Social media discussions specific to DED on channels such as Twitter, Blogs, Forums and Newswires were evaluated to identify discussion themes, stakeholders and sentiment Post data anonymization, text algorithms and manual curation was used to analyse and map psychological aspects expressed by stakeholders to understand impact on patients’ QoL and state-of-mind.

RESULTS: A total of 2,641 posts were considered for analysis. Twitter was primary source of information, contributing to 61% of total posts. Discussions were primarily on treatment options, causes and symptoms of DED. The analysis provided key insights into patients’ experiences, patient journey and unmet needs. While the study suggests a need to increase awareness about DED among patients, lack of standard diagnostic tools, treatment options and specialists emerged as key unmet needs. Poor QoL is also highlighted by patients with significant impact on daily activities, work and commute. Further exploration of QoL also revealed a huge gap in patient emotional needs. Fear, anger and sadness were expressed by 20%, 18% and 30% posts respectively. Additionally, 1% of patient posts also indicated suicidal tendency.

CONCLUSIONS: Real world data from social media is an effective way to generate patient insights to inform decision-making and strategy in early drug development. Findings from social media analysis and patient preference studies can be leveraged to bring the patient perspective into clinical development and access plans. It will be interesting to see how HTA bodies and payers evaluate these patient insights, for consideration into early scientific advice.