Medical data surveyed from social media proved viable

Vancouver, BC – New research shows that social media platforms may be a viable tool in medical data collection for research. The study presented this week at the 2019 Association for Research in Vision and Ophthalmology (ARVO) Annual Meeting in Vancouver, BC used Facebook to study the prevalence of ocular Graft Versus Host Disease (oGVHD), one of the possible risks of undergoing allogeneic stem cell transplantation.

Lead researcher Barbara Caffery, OD, PhD and a team at Toronto Eye Care reviewed responses to a request posted to a Facebook forum for patients with Graft Versus Host Disease (GVHD). Researchers heard from 584 patients in the group who were asked to supply their ocular-related symptoms, any treatments they went through to relieve those symptoms and their opinion on the success of the treatments in relieving those symptoms.

Of the 584 participants, results showed 25.5% (149) were also suffering from oGVHD. Among this group, 25 specific dry eye symptoms were reported, with 47% reporting dry eye, 22.5% reporting oGVHD and 10.8% reporting pain. Treatments were reported by 61% of the participants. While the results showed that the most common treatments were artificial tears, punctal plugs, scleral contact lenses, RESTASIS® and autologous serum, the reportedly most successful treatments were bandage soft contact lenses (100% success rate of 9 posters), omega-3s (100% success rate of 4 posters) and scleral contact lenses (95.42% success rate of 22 posters).

“Our research demonstrates that social media can allow us to easily reach sufferers of rare diseases such as GVHD,” said Caffery. “With social media, recruitment is not a struggle. Through our study using Facebook, we learned that these patients have problems with access to many aspects of their care, including eye care, and that our ocular GVHD treatments are not always successful. We look forward to using questionnaires on these sites to further understand the patient experience of GVHD.”

Abstract title: The prevalence of ocular Graft Versus Host Disease on a Facebook forum
Presentation start/end time: Monday, April 29, 4 - 5:45pm
Location: West Exhibition Hall
Abstract Number: B0484 - B0525

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The Association for Research in Vision and Ophthalmology (ARVO) is the largest eye and vision research organization in the world. Members include nearly 12,000 eye and vision researchers from over 75 countries. ARVO advances research worldwide into understanding the visual system and preventing, treating and curing its disorders. Learn more at
The 2019 ARVO Annual Meeting will take place in Vancouver, BC from April 28 – May 2. The Meeting is the premiere gathering of nearly 12,000 eye and vision researchers from around the world. During the Meeting, more than 6,600 abstracts will be presented on the latest basic and translational research in eye and vision science.

All abstracts accepted for presentation at the ARVO Annual Meeting represent previously unpublished data and conclusions. This research may be proprietary or may have been submitted for journal publication. Embargo policy: Journalists must seek approval from the presenter(s) before reporting data from paper or poster presentations. Press releases or stories on information presented at the ARVO Annual Meeting may not be released or published until the conclusion of the presentation.

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