I would be interested to hear the extent to which any of my fellow real live dry eye patients can relate to Novartis’ “findings” in this study, where social media posts about dry eye were analyzed. This is part of an initiative on Novartis’ part to involve “the patient voice” in their drug development process in order to address “unmet” needs, and is one of many studies they’ve been publishing on this subject in dry eye and other areas of medicine.
Their assessment of which symptoms are most commonly mentioned was way off, in my opinion: “eye dryness” tops the list. Seriously? How many of us, if we could describe our symptoms, would actually describe it as “eye dryness”, as opposed to burning, irritation, grittiness, light sensitivity, watery eyes or any number of other things?
I hope that in the the future, pharmaceutical companies who want to “strengthen their understanding about patient experiences and their unmet needs in DED” will consider coming to the Dry Eye Foundation to team up on research so that they can get the real facts from real people in a thoughtful way.
Evaluating Patient Experiences in Dry Eye Disease Through Social Media Listening Research. Cook et al, Ophthalmol Ther. 2019 Jun 3.
Abstract
INTRODUCTION:
Social media listening (SML) is an approach to assess patient experience in different indications. This is the first study to report the results of using SML to understand patients' experiences of living with dry eye disease (DED).
METHODS:
Publicly available, English-language social media content between December 2016 and August 2017 was searched employing pre-defined criteria using Social Studio®, an online aggregator-tool for posts from social media channels. Using natural language processing (NLP), posts were indexed using patient lexicon and disease-related keywords to derive a set of patient posts. NLP was used to identify relevance, followed by further manual evaluation and analysis to generate patient insights.
RESULTS:
In all, 2279 possible patient records were identified following NLP, which were filtered for relevance to disease area by analysts, resulting in a total of 1192 posts which formed the basis of this study. Of these, 77% (n = 915) were from the USA. Symptoms, causes, diagnosis and treatments were the most commonly discussed themes. Most common symptoms mentioned were eye dryness (138/901), pain (114/901) and blurry vision (110/901). Pharmaceutical drugs (prescription and over-the-counter; 55%; 764/1393), followed by medical devices (20%; 280/1393), were mentioned as major options for managing symptoms. Of the pharmaceutical drugs, eye drops (33%; 158/476) and artificial tears (10%; 49/476) were the most common over-the-counter options reported, and Restasis® (22%; 103/476) and Xiidra® (6%; 27/476) were the most common prescription drugs. Patients voiced a significant impact of DED on their daily activities (4%; 9/224), work (23%; 51/224) and driving (12%; 26/224). Lack of DED specialists, standard diagnostic procedures, effective treatment options and need to increase awareness of DED among patients were identified as the key unmet needs.
CONCLUSIONS:
Insights revealed using SML strengthen our understanding about patient experiences and their unmet needs in DED. This study illustrates that an SML approach contributed effectively in generating patient insights, which can be utilised to inform early drug development process, market access strategies and stakeholder discussions.
FUNDING:
Novartis Pharma AG, Basel, Switzerland. Plain language summary available for this article.