At Wilmer Eye Institute, Johns Hopkins Medicine, the name Robert Massof is associated with many firsts. He led the research and development of the first head-mounted display system to help people with vision impairment. He was founding director of the Lions Vision Research and Rehabilitation Center at Wilmer — the first of its kind — and he was the first to establish a way to measure the ability of people with vision impairment to function day to day. As Massof retires after 44 years at Wilmer, his colleagues celebrate his many — and many-faceted — contributions to the field.
Massof arrived at Wilmer in 1976 with a Ph.D. in physiological optics. Upon completing a postdoctoral fellowship, he worked his way to becoming a full professor of ophthalmology, eventually holding a joint appointment at the Johns Hopkins Applied Physics Lab. He was also a professor of neuroscience at the Johns Hopkins University School of Medicine.
As a psychophysicist in his earliest days at Wilmer, Massof applied his theoretical and modeling skills to the work of Daniel Finkelstein, a Wilmer clinician who was studying the natural history of retinitis pigmentosa. Even then, Massof assumed the role of mentor, one he repeatedly undertook throughout his career.
Gislin Dagnelie first met Massof as a graduate student in the fall of 1984. “I gave a talk about my Ph.D. project in Amsterdam, and at the end of the day he asked if I would be interested in becoming a postdoc in the lab,” recalls Dagnelie, who initially worked with Massof on the retinitis pigmentosa natural history study. That study ended in 1991, and Dagnelie developed his own lines of research, but he collaborated with Massof on a variety of projects spanning a 34-year period. Today, Dagnelie is an associate professor of ophthalmology and the associate director of the Lions Vision Research and Rehabilitation Center at Wilmer.
Fulfilling a Vision
In 1988, with the retinitis pigmentosa study still underway, Massof was tasked with running an organization established at the behest of Arnall Patz, then-director of Wilmer and a pivotal figure in the history of ophthalmology. It was Helen Keller herself who had encouraged Patz to establish the joint project, between the service organization Lions Club International and Wilmer, to help visually impaired people worldwide.
By all accounts, Massof worked tirelessly to cultivate a relationship with the local Lions organization known as Lions Multiple District 22, which resulted in the organization endowing the Lions Vision Research and Rehabilitation Center at Wilmer. Jim Deremeik, manager of the center’s education and rehabilitation program, worked with Massof for over 28 years. “The efforts of Bob in speaking to local Lions clubs, rallies and conventions were a testament to his desire to see this effort successfully completed,” Deremeik says.
Under Massof’s directorship, the center grew to include a multidisciplinary team of doctors and rehabilitation specialists who collaborated to restore and improve the ability to function day to day for patients with visual impairment — to help them better read, drive, shop and other important activities.
Judith Goldstein, current director and chief of the center, worked closely with Massof for more than a dozen years. She says that when she arrived at Wilmer, he was leading not only the Lions Vision Center, but also the research in low vision science.
In 1985, Massof had begun a 12-year collaboration between Wilmer, NASA and the Veterans Administration to develop the Low Vision Enhancement System (LVES, pronounced “Elvis”) — a portable video visor that magnified and clarified images for the wearer. Goldstein says it was considered space-age technology at the time. “It was the first head-mounted display system to help people with vision impairment or vision loss to see faces, TV ... and it was the origination of that technology that is the basis for all the head-mounted display technology on the market today,” says Goldstein.
High Impact on Low Vision
Even as he worked to advance the technology, Massof and his colleagues began a concerted effort to advocate for reimbursement of low vision services within the Medicare system. This included the publication of a pair of articles in the Journal of Vision Rehabilitation arguing that low vision rehabilitation should be considered equivalent to physical and occupational therapy.
Still, an important question remained: How much were low vision services actually helping people? Massof knew the ability to measure this was integral to establishing what was working, what wasn’t, and what problems remained as impediments to functioning in day-to-day life. As Goldstein explains,
Here's somebody in your clinic and they're 20/200, and after cataract surgery, they're 20/20, that's a pretty obvious measurement. What we never knew how to do well was to measure changes in function. If you took that patient from 20/200 to 20/20, what does that mean for their quality of life? What can they do that they couldn't do before?
In 2009, with the support of Lions Club International and the Reader’s Digest Foundation, Massof and Goldstein developed the Low Vision Rehabilitation Outcome Study, employing a collaborative network of low vision specialists across the U.S. to examine the epidemiologic, vision impairment and function characteristics of patients seeking outpatient low vision services. The research marked the first time these measures were studied outside the VA system, in a private setting. “Our goal was to be able to do the science so we could ultimately apply different interventions to see how we can make outcomes even better,” Goldstein says.
By administering the questionnaire to a large number of people with differing ability levels, the researchers were able to assess both the difficulty of a given activity and people’s ability levels through a process known as conjoint measurement. Goldstein points out that establishing such methods is important, as it allows others to share their measures across different centers, locations or studies. “It allows us to compare our findings with other people's findings and put them on the same scale,” she says.
Not only did the work advance the field, but the study had implications for low vision work on a patient practical level. “We realized that so much of the time that's taken to see patients comes from the history we take,” says Goldstein. “People come to their vision loss with many different character traits, and it's those traits that inform their ability and their goals of rehab. It might take us 20 minutes to talk to a patient before we ever examine them, to understand what they do for a living. Who do they live with? How's their mobility? How's their reading?”
To address this challenge, Massof developed the Lions Low Vision Rehabilitation Network (LOVRNET), wherein members of the Lions — community-based volunteers — call patients in advance of their appointment to administer the questionnaires so all the data can be provided to the clinician prior to the appointment.
He then brought the LOVRNET model to multiple vision centers across the Mid-Atlantic region, with the goal of improving efficiency in the delivery of low vision care. “He took a research model and the community relationship with the Lions and applied it in a really practical way,” Goldstein says. “I think that's one of the unique things about him, is that he continues to bridge that divide between the research all the way to the patient. He's always making sure that the work he does is clinically relevant.”
The Scientist as Teacher
Sharing what he learns has been a vital aspect of Massof’s mission. Over the years, he established an onsite training program for service providers nationwide and, eventually, an online low vision rehabilitation course — another first for the field. He’s also delivered hundreds of visiting professorships and named and invited lectures in 14 countries across three continents, as well as in 33 states and the District of Columbia. Massof’s publications number in the hundreds as well. Collectively his research, clinical activities and efforts at disseminating his findings have resulted in the education of untold numbers of scholars and practitioners and trickled into the lives, directly or indirectly, of patients who have benefited from his work.
Today, Massof’s efforts continue to influence the field, through his body of work and the education of those participating in the Low Vision Fellowship Program at Wilmer — the only one of its kind in the country. “Dr. Massof has been integral in training them on the research side,” Goldstein says. “I believe it's that research component that makes these fellows want to do low vision rehabilitation, because they get a deeper understanding of the science. The fellowship training program is a really important part of his legacy.”