Retinoblastoma care goes digital: insights from two decades of teleophthalmology

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A recent study published in JCO Global Oncology¹ highlights the impact of teleophthalmology in enhancing the management of retinoblastoma over a 20-year period. Through the Orbis Cybersight platform, online mentorship has improved disease-specific knowledge and treatment strategies, underscoring the potential of tele-education in building capacity for retinoblastoma care, especially in low- and middle-income countries. Nathan Congdon, MD, director of research at Orbis International, shares more in this interview with Ophthalmology Times.

Note: This transcript has been edited lightly for clarity.

How did the study demonstrate that telemedicine, specifically through the Cybersight platform, can improve retinoblastoma care in low-resource settings? Could you highlight the key findings from the research?

With support from Heidelberg Engineering and lead researcher Mathew W. Wilson, MD, of Hamilton Eye Institute, The University of Tennessee Health Science Center; and the Department of Surgery, Division of Ophthalmology, St Jude Children's Research Hospital, both in Memphis, the study examined the impact of the Orbis telemedicine platform (Cybersight) on retinoblastoma care in low-resource settings. Over two decades, the platform facilitated mentorship and knowledge transfer, leading to improved disease-specific understanding and, most importantly, measurable improvements in management of retinoblastoma.

Key findings from the research include:

• Enhanced knowledge transfer. The platform effectively bridged educational gaps by providing access to specialized knowledge, which is often scarce in low-resource settings.
• Improved disease management. Through sustained mentorship, healthcare providers in underserved areas delivered more detailed assessments and better management for this potentially life-threatening condition, as revealed in significantly enhanced scores when a pre-determined grading template was applied to their actual medical notes.

Overall, the study underscores the significant role telemedicine platforms like Cybersight can play in enhancing care for complex and potentially life-altering conditions such as retinoblastoma in resource-limited environments.

What were some of the challenges in diagnosing and treating retinoblastoma in low- and middle-income countries prior to the implementation of telemedicine solutions, such as this platform?

Diagnosing and treating retinoblastoma in low- and middle-income countries involves several significant challenges, including:

• Limited access to specialists. Many low- and middle-income countries have a shortage of ophthalmologists and oncologists with expertise in diagnosing and treating retinoblastoma, leading to delayed or missed diagnoses.
• Limited training opportunities. Traditional hands-on training opportunities for specialists to improve their skills is extremely limited. This is the challenge which Cybersight mentorship directly addresses.
• Late-stage diagnosis. Due to a lack of awareness and inadequate screening programs, many children with retinoblastoma are diagnosed at advanced stages of the disease, when treatment options are limited, reducing survival rates. Cybersight mentorship can help to close this loop by ensuring that doctors encountering these young patients early in their referral journey are better-equipped to make life and sight-saving diagnoses, delivering care when it is most effective.
• Geographical barriers. Patients in rural and remote areas face difficulties reaching specialized medical centers, leading to further delays in diagnosis and treatment.

The introduction of telemedicine platforms like Cybersight has helped address these barriers by providing remote expert mentorship, virtual consultations, AI-assisted diagnostics, and access to global medical expertise, ultimately improving early detection and treatment outcomes for children with retinoblastoma in low-resource settings.

How does this mentorship model work, and what role did virtual mentoring play in improving the skill sets of eye care providers managing retinoblastoma cases?

Cybersight Consult, a component of the platform, connects physicians in low-resource areas with expert mentors for advice on complex clinical cases, enabling case discussions, guidance, and continuous medical education. Ophthalmologists in low- and -middle income countries without the skilled training necessary to diagnose and treat their patients with retinoblastoma can seek advice from physicians with specialized knowledge and work together to treat their patients. The study showed this training helped doctors in low-resource settings to build expertise in retinoblastoma management over time, enhancing the standard of care they could deliver independently and improving patient outcomes.

From the study’s findings, were there particular clinical areas where physicians in low-resource settings showed the most improvement over the 20-year study period?

The study found that over a 20-year period, there was significant improvement in knowledge-sharing between mentors and physicians in low-resource settings on the platform. In particular, there was increased understanding and recording of patient symptoms, and improved documentation of disease type and stage. These are crucial building blocks in enhancing local physicians’ capacity to deliver life-saving care.

What role do you believe telemedicine can play in increasing early diagnosis rates for retinoblastoma, given that children in low-income countries may be diagnosed too late for effective treatment?

The referral journey for a family seeking complex care in under-resourced medical systems can be incredibly complex and frustratingly time-consuming, as the pathways to reach scarce experts are often not clearly marked. Cybersight mentorship training helps to ensure that providers encountering families of affected children earlier in this journey are far more likely to make accurate diagnoses and deliver impactful care in a timely fashion, when vision and lives can still be saved.

How has the partnership with a leading provider of advanced imaging solutions helped with the delivery of these educational resources and consultations?

Heidelberg Engineering’s support of Cybersight has been very important for Orbis and our ability to expand the platform. We value their partnership and their continued commitment to supporting our research.

By furthering our work, companies like Heidelberg Engineering play a vital role in saving the lives and sight of society’s most vulnerable members. Corporate sponsorships provide stable financial backing, allowing Orbis to plan longer-term projects and scale our initiatives, training more eye care professionals, and helping more patients.

Do you foresee telemedicine and platforms like Orbis’ being adopted more widely in other ophthalmic subspecialties, and if so, how might this affect global eye care?

Absolutely! The team is always working with Orbis clinical staff and global experts around the world to develop and share new content with the platform's more than 100,000 users around the world. Recent examples include new content around management of refractive error, the leading cause of global vision loss among children and adults, courses in oculoplastics, a specialty focused on the lids and eye socket which support a healthy eye, and a very popular self-paced, 5-hour course in recognizing glaucoma based on optic nerve photos, which has been proven, in another published Orbis study,² to bring participants with no ophthalmic background to a level of accuracy similar to local specialists.

How does the accessibility of this platform influence the overall training and retention of eye care providers in underserved regions, particularly for complex conditions like retinoblastoma?

The platform is free and available anywhere with an internet connection. We believe the ease of access to the platform is essential for its continued impact. If there are barriers to accessing the platform, then less people will be able to benefit from its resources.

Furthermore, the more specialized the condition, like retinoblastoma, the harder it is for eye care professionals to find support, mentorship, and training. The platform helps to fill that gap with not only the consult feature, but with all of its courses, lectures, AI features, etc.

Considering the research spans two decades, can you share any insights into how the platform has evolved over time to meet the growing needs of eye care providers in diverse regions?

The platform has experienced remarkable growth since its inception over 20 years ago, evolving far beyond its original function of providing consultations on complex cases. The platform was first conceived in 1998 when Orbis Volunteer Faculty member Eugene M. Helveston, MD, used email to exchange questions and advice with colleagues worldwide. Today, his vision has expanded into a comprehensive digital resource housing dozens of tools, including the Cybersight Library, a free repository with over 1,000 surgical videos, quizzes, textbooks, and simulation training materials—available in more than nine languages.

Cybersight now offers online courses in multiple languages and broadcasts live lectures and surgeries from the Orbis Flying Eye Hospital to partner hospitals and classrooms globally. Cybersight AI is an artificial intelligence tool capable of detecting common eye diseases in seconds by analyzing fundus photographs. This technology is transforming early diagnosis and treatment for conditions like diabetic retinopathy and glaucoma, helping doctors improve patient outcomes.

Recently, the Orbis telemedicine platform achieved a major milestone: surpassing 100,000 registered users, including 15% of the world’s ophthalmologists. In February 2020, the platform had around 20,000 users, and just a few years later, that number has more than quintupled. The continued surge in participation highlights the growing global demand for virtual learning and mentorship in eye care, reinforcing the platform’s vital role in advancing ophthalmic education and patient care worldwide.

What next steps would you suggest for further integrating telemedicine into the standard of care for retinoblastoma, particularly in areas where pediatric ophthalmologists may be scarce?

Orbis is always excited to seek partners to put these powerful and innovative tools into the hands of more and more users in low-resource areas around the globe.

References

1. Huemmer SE, Patnaik JL, Ybarra S, Congdon N, Cherwek DH, Wilson MW. Teleophthalmology through online mentorship over a 20-year period: education and capacity building. JCO Glob Oncol. 2024;10:e2400297. doi:10.1200/GO-24-00297

2. Olawoye OO, Ha TH, Pham N, et al. Impact of a short online course on the accuracy of non-ophthalmic diabetic retinopathy graders in recognising glaucomatous optic nerves in Vietnam. BMJ Open. 2023;13(11):e076623. Published November 9, 2023. doi:10.1136/bmjopen-2023-076623