Privacy considerations for retinal images

Join the National Eye Institute's Office of Data Science and Health Informatics (ODSHI) for their upcoming event, Privacy Considerations for Retinal Images. 

Public misconceptions over ocular imaging, especially the conflation of iris imaging to “retinal scans” increases barriers to data sharing and advancement in the field. At this event we will gather key opinion leaders to discuss this important topic and brainstorm ideas for educating the public.

Speakers

Leo Anthony Celi, M.D., M.P.H., M.Sc., is the principal investigator behind the Medical Information Mart for Intensive Care (MIMIC) and its offspring, MIMIC-CXR, MIMIC-ED, MIMIC-ECHO, and MIMIC-ECG. With over 70,000 users worldwide, an open codebase, and close to 10k publications in Google Scholar, the datasets have undoubtedly shaped the course of machine learning in healthcare in the United States and beyond. His group has written 3 open-access textbooks: “Secondary Analysis of Electronic Health Records” in 2016, “Global Health Informatics: Principles of eHealth and mHealth to Improve Quality of Care” in 2017, and “Leveraging Data Science for Global Health” in 2020. The first has been downloaded over 1.7 million times and translated into Mandarin, Spanish, Korean and Portuguese. The group has created two open online courses, “Global Health Informatics'' and “Collaborative Data Science for Healthcare”. Finally, in partnership with hospitals, universities and professional societies across the globe, Dr. Celi and his team have organized 45 datathons in 22 countries, bringing together students, clinicians, researchers, and engineers to leverage data routinely collected in the process of care.

Pearse Keane, M.D., M.Sc., is Professor of Artificial Medical Intelligence at UCL Institute of Ophthalmology, and a consultant ophthalmologist at Moorfields Eye Hospital, London. Since 2020, he has been funded by UK Research & Innovation (UKRI) as a Future Leaders Fellow, and in 2023 he became a National Institute for Health Research (NIHR) Senior Investigator. He is originally from Ireland and received his medical degree from University College Dublin (UCD), graduating in 2002.

In 2016, he initiated a collaboration between Moorfields Eye Hospital and Google DeepMind, with the aim of developing artificial intelligence (AI) algorithms for the earlier detection and treatment of retinal disease. In August 2018, the first results of this collaboration were published in the journal, Nature Medicine. In May 2020, he jointly led work, again published in Nature Medicine, to develop an early warning system for age-related macular degeneration (AMD), by far the commonest cause of blindness in many countries. In 2023, he led the development of RETFound, the first foundation model in ophthalmology, published in Nature and made available open source.

Flora Lum, M.D. is the Vice President of Quality and Data Science for the American Academy of Ophthalmology, and the Executive Director of the H. Dunbar Hoskins MD Center for Quality Eye Care. She has overseen the Academy’s IRIS® Registry (Intelligent Research in Sight) since its initiation, which has collected 600 million patient visits on 80 million patients as of January 1, 2023, and reported on quality measures for several thousand ophthalmologists each year since 2017. She oversees the quality of care and evidence-based activities of the Hoskins Center, including Preferred Practice Patterns, Ophthalmic Technology Assessments and Clinical Statements, and the creation, stewardship and revision of performance measures which are incorporated into the Centers for Medicare and Medicaid Services’ Merit-based Incentive Payment System. She has co-authored more than 180 scientific peer-reviewed articles, and presented at over 50 scientific meetings, and is a reviewer for Ophthalmology Journal. Recently, she submitted 3 grant proposals as the Principal Investigator, which were awarded by the Council of Medical Specialty Societies, and the US Food and Drug Administration.

She staffed the Hoskins Center stewardship of the Premium IOL Patient-Reported Outcome measure which was approved by the FDA for their Medical Device and Development Tool program, and served as co-Principal Investigator for the Agency for Healthcare Research and Quality (AHRQ)- funded grant, RiGOR, Registry in Glaucoma Outcomes Research, A Prospective Observational Study Comparing the Effectiveness of Treatment Strategies for Primary Open-Angle Glaucoma from 2011-2013. She also directs the Academy’s health information technology activities, including development of Digital Imaging and Communications in Medicine (DICOM) standards, Systematized Nomenclature for Medicine (SNOMED) terminology, and Integrating the Healthcare Enterprise (IHE) Eye Care testing and demonstrations as well as development of criteria for ophthalmology-specific electronic health records. 

Luis Filipe Nakayama, M.D., Ph.D., is a medical doctor and ophthalmologist specializing in retinal and vitreous surgery. Dr. Nakayama is a researcher at the Federal University of São Paulo (UNIFESP) and the Massachusetts Institute of Technology (MIT). His research focuses on creating ophthalmological datasets for data science and artificial intelligence applications, and on mitigating biases for fair deployment.

Kerry Goetz, M.S. is the Associate Director for the National Eye Institute’s Office of Data Science and Health Informatics. The office is responsible for advancing data management and sharing strategies to make NEI data FAIR (Fully AI-Ready & Findable, Accessible, Interoperable, and Reusable). For more than a decade, Ms. Goetz has been leading the eyeGENE Program, a controlled access resource with data, samples, and a patient registry for rare eye conditions. She has implemented the sharing of several other clinical trial datasets through NEI BRICS, part of the NEI Data Commons. She has also been entrenched in standards development for more than 15 years. Ms. Goetz co-leads the Eye Care and Vision Research Observational Health Data Sciences and Informatics Working Group, is a member of the American Academy of Ophthalmology Standards Working Group, and also works to align imaging standards and health data to enable groundbreaking research.

Series Description

The NEI Office of Data Science and Health Informatics (ODSHI) cordially invites you to join us for an engaging series of lecture events and dialogues throughout 2024. These gatherings will showcase esteemed experts from academia, industry, non-profits, government sectors, and others who will delve into their cutting-edge work on topics at the intersections of health informatics and data for vision science. Unlike conventional seminars, this series offers interactive sessions that encourages dialogue among audience members and with expert speakers. Embracing a diverse spectrum of topics, these events will highlight the breadth of ongoing research, the pertinent gaps and challenges therein, and the promising opportunities on the horizon.

Accommodations

If you are an individual with a disability who needs reasonable accommodations to participate in this event, please send an email with your request to the Office of Data Science and Health Informatics at neiodshi@nih.gov at least 3 days prior to the event.