Article written by Ann Brody GuyRoughly half of the ailments affecting the 29 million people India classified as “disabled” fell into one category: eye problems. In response, the nonprofit LV Prasad Eye Institute (LVPEI) developed an elaborate health network to bring much-needed eyecare to the country’s massive rural populations, where exposure to ultraviolet rays, agricultural dust, and diet-based illnesses lead to sight degeneration and early cataracts. At the base of the pyramid-shaped system, resident emissaries go door-to-door to identify neighbors who have eye troubles, then dispatch patients to local vision centers for screening and eyeglasses or to secondary, ophthalmologist-staffed regional centers for common treatments like cataract surgery. More complex procedures are available at expert care centers higher up the pyramid. It’s a system that would be the envy of any country in the world, except for one thing: people weren’t using it.
“When you’re there you see big problems and little problems and this was a big problem,” says Clifton Schor, an emeritus professor at the UC Berkeley School of Optometry, who, in 2012, was spending his sabbatical at LVPEI to work with a former student. Schor and his wife Nance Wilson, a social epidemiologist who consults on community-engagement projects, learned of the issue when they met Padmaja Kumari Rani, a LVPEI physician specializing in retinal disease and surgery.
“To be cost effective, we wanted at least 50 patients a day to walk into the vision center,” recalls Rani, whose work supports LVPEI’s efforts to prevent blindness and provide vision rehabilitation. “We were getting six.” Researchers had already surveyed the target populations and held focus groups, and nothing changed.
Wilson, who earned both her MPH and PhD at Berkeley’s School of Public Health, suggested using PhotoVoice, a photography-and story-centered communication tool that enables community members to identify and document issues themselves rather than answering prescribed questionnaires, which, she says, are often laden with biases and assumptions that researchers, however inadvertently, bring from outside a region or a culture. Rani agreed to try it and Schor secured funding for cameras and a computer from a UC Berkeley faculty-research fund. In collaboration with LVPEI partners, they asked selected residents of the target region to document barriers to receiving eyecare
Soon, the photos came back. Through stories and discussions, problems were revealed. Transportation was a major hindrance. The nearest bus stop was 1.5 km from the hospital-based service center. That might not be far in a city, Rani says, but “it’s quite a distance to walk in these rural areas, especially for people who are visually impaired… and especially after dark.”
When migrant farm workers returned from up to six months of seasonal farm work, the clinics got so busy that patients often waited more than four hours to be seen. Long lines caused some patients to miss the last bus home and prevented others from receiving care at all. Additionally, the aging grandparents who cared for the migrant workers’ young children while they were away were unable to travel to the clinics without an escort to help manage the long walks.
Diabetes and high blood pressure—diseases that can impact eye health—were common. But instead of treating these conditions, the stories revealed, doctors were simply referring patients elsewhere. Reluctant to lose precious time and a day of wages to travel to a different clinic, patients didn’t follow up.
LVPEI responded quickly to the findings. An administrative manager at a rural center approached the public transport office about relocating the bus stop to a more easily accessible location. Now, the bus stops right at the hospital doorstep. Over tea in the hospital canteen, the same manager befriended the bus driver and explained some of challenges facing the patients. This small act of kindness has turned into a tradition, and today drivers routinely enjoy tea or coffee while they wait for patients to finish their evening appointments.
To address overcrowding, the Center of Excellence—the education facility at the top of the pyramid—increased enrollment in its fellowship program during the dry summer months, when the migrant workers returned home. That way, more of the fellows—the young doctors who staff the secondary centers while they train in subspecialties—could be posted during the facilities’ busy season. The long waits quickly disappeared.
To eliminate unnecessary referrals, Rani and her team provided doctors with refresher training on diabetes and hypertension care, and implemented simple checklist- based screening and management protocols at all 15 secondary centers.
The improvements yielded results. In 2013, the secondary centers provided care to an additional 2,000 patients per year. And each year thereafter, the numbers grew by another 2,000 patients, with clinics nearing capacity by 2018. Schor calculates that the clinic sees about 20,000 patients a year now, and that 10-15% of these patients are also screened or managed for vascular diseases, like diabetes and hypertension. “That’s a lot of previously undiagnosed or untreated people. [The LVPEI team] ended up doing much more than bringing in patients. They actually broadened the service,” he says. “They’re doing something that’s preemptively reducing risk of vision loss.” “It’s just remarkable,” Wilson says.“We wouldn’t have found out any of this with a questionnaire.”
Not all the findings could be so expediently addressed. The project brought widespread alcoholism to light, but intervention beyond providing referrals was outside the Institute’s scope of care. Social disparities like impassable road conditions in poorer village areas continue to make access to healthcare more difficult for some people. Other challenges, like providing escorts for the elderly, disappeared when transportation and seasonal overcrowding were improved.
Rani, who was the lead author on “Envisioning Eye Care from a Rural Perspective: A Photovoice Project from India,” published in the October, 2017 issue of International Quarterly of Community Health Education, had led several qualitative studies that used the more standard surveys. Now, she says, if she needs a qualitative tool, she’ll only use PhotoVoice.
Findings in survey-based studies, she says, “will never match what we did in PhotoVoice. It goes to the root cause of problems. It doesn’t just ask questions—you facilitate and you listen and you try to understand. Not only the problems but also the solutions come from the participants. This is very powerful.”
Two phases of photo based group discussions generated stories from different perspectives. Phase I included mixed gender groups who worked throughout the LVPEI system but lived in the study region. Phase II included single-gender and youth groups composed of study area residents who had untreated visual impairment.
Photos 3 & 4
Elderly grandparents caring for migrant workers’ children could not make the trip to vision centers on their own. 5 Poor road quality made walking in the evenings difficult, especially for people with vision problems.
Seasonal farm work led to overcrowding during the dry summer months, when migrant workers returned home.
By Julia Richardson, class of 2021