Access to quality eye care remains a critical issue for underserved populations, especially those at higher risk for conditions such as glaucoma. Glaucoma, a leading cause of irreversible blindness in the world, disproportionately affects Black Americans and those living with lower socio-economic status.¹ The prevalence of glaucoma in the United States is expected to grow from 3.1 million people to 4.2 million by 2030.^2,3 Despite these serious health risks, many people in these high-risk communities face significant barriers to accessing eye care, as over 50% of people with glaucoma will remain undiagnosed and untreated using our current screening and detection programs.⁴ The National Academy of Science, Engineering & Medicine (NASEM) issued a call to action to address these barriers and improve eye health in underserved populations and address disparities to minimize vision loss in the United States.⁵ Since glaucoma is a leading cause of blindness in the United States, scientists and clinicians are centering attention towards improving glaucoma detection, diagnosis and care.

Community-engaged research (CER) provides an opportunity for understanding and addressing these barriers by directly involving communities in the research who have populations at high risk of disease. CER aims to bridge the gap between the research and the targeted population the research is intended to reach.⁶ By learning from community members how to best enhance their experience in glaucoma and eye disease screening, a CER framework can help tailor interventions to the unique needs and preferences of the community.

The Michigan Screening and Intervention for Glaucoma and Eye Health through Telemedicine (MI-SIGHT) program used the principles of CER to help design the program to address disparities in eye care access and outcomes. Currently, glaucoma screenings take place in eye doctors’ offices when a person comes in for routine eye care. However, eye doctors’ offices are often distant from the homes and trusted care providers of those who are uninsured and medically underserved. Navigating to a separate eye clinic away from trusted clinics can raise significant logistical, socioeconomic, and psychological barriers to accessing glaucoma screening. Telemedicine could enable specialty glaucoma screening programs to be available at trusted local primary care community clinics, making high-quality glaucoma screening much more accessible for populations at high risk of disease. The MI-SIGHT program integrates telemedicine into two trusted community clinics - a free clinic and a Federally Qualified Health Center - making glaucoma screening more accessible to populations that might otherwise face significant barriers to specialized care. Embedded within the MI-SIGHT program is a randomized controlled trial testing whether personalized coaching and care navigation compared to written education and care navigation improve recommended attendance at follow for those who screen positive for glaucoma.⁷

While the primary goal of the MI-SIGHT program is to improve glaucoma and eye disease detection, the focus of this paper is on the qualitative outcomes related to community engagement and identifying barriers to care. Specifically, this paper centers on the participant’s experiences with the program and the broader impact of community-based interventions on care utilization. The study has three primary objectives: 1) to understand barriers to past eye care utilization and motivations for participating in the current eye disease detection program; 2) to assess participants’ experiences with the MI-SIGHT program, and 3) to compare experiences of participants who screened positive for glaucoma/suspected glaucoma who were randomized to either receive personalized coaching and care navigation or receive standard written education and care navigation.

We approached and enrolled a total of 42 participants (100% participation rate. Of the 42 interviewed, 22 were from the free clinic and 20 were from the FQHC. We ultimately included 22 participants who screened negative for glaucoma, 20 participants who screened positive for glaucoma, and among those, 10 who had been randomized to personalized coaching and care navigation and 10 who had been randomized to standard education and care navigation (Figure 1). These sampling strata met the purposive sampling goals discussed in the methods. The median age of participants was 58.7 (range 27–90). Fifteen participants self-identified as male and 27 as female. 57.5% of participants identified as Black (n=23), 32.5% as White (n=13), 5% as Asian (n=2), 5% as other (n=2), and 3% identified as Hispanic or Latino. The demographic information is summarized in Table 1.

Thematic saturation was reached after analyzing thirteen of the forty-two interviews; at this point no new themes were identified from additional interview transcripts, but all were analyzed to ensure sufficient content in each sub-group. The kappa value for inter-rater reliability between the two coders was 0.87. The main themes that arose were rapport, overall program satisfaction, eyeglasses satisfaction, and communication. Each theme had both positive and negative valences with the coded text tallied by valence in Figure 3. Within previous barriers to accessing eye care and motivations for participating in the MI-SIGHT program, previous barriers and specific motivations were identified and these are tallied and visualized in Figure 2a and 2b.

Overall, using community-engaged research methods and involving clinic staff, physicians, administrators and patients in creating the MI-SIGHT Program15 was effective in creating a program that addressed many of the barriers people reported to utilizing eye care in the past. People reported barriers to accessing eye care (prior to their participation in the MI-SIGHT program) that included the high cost of eye care including costs for the appointment and for glasses, a lack of insurance to offset these costs, having difficulty taking off work to attend an appointment, needing to take care of children or elders, having difficulty accessing reliable transportation and not being aware that people should be screened for eye disease as they age. The barriers the MI-SIGHT program was able to address were 1) cost, as the screening program was free and offered low-cost glasses; 2) transportation as the program was located in easily accessibly neighborhood locations along bus lines; 3) more accessible appointment times as they were offered whenever the medical clinic was open as opposed to on just select dates when a mobile screening program was in town; and 4) trust, as people had trust both in the university and in their community clinic. An important motivator for people to engage in the program was hearing about the program through word-of-mouth. After participating, members of the community trusted the MI-SIGHT program and in turn, referred their family and friends. Every participant interviewed expressed how the rapport and communication between the ophthalmic technician in the clinic and participants was excellent and that this rapport was an important engagement tool. Participants were very satisfied with their eyeglasses – with the style, the function, and the price. This satisfaction with how they were treated and how the glasses fit led participants to tell their friends and family about the program and this engendered more trust in the program.

Participants experienced many barriers to utilizing eye care prior to the MI-SIGHT program, with cost as the most significant barrier. Many were uncertain about whether their medical insurance covered vision and eye health-related expenses. Historically, the lack of insurance coverage and high costs, even for those with insurance, have been identified as obstacles to using eye care services and correcting refractive error with eyeglasses.^16,17 The MI-SIGHT program addressed these barriers by providing affordable and accessible eye care, including free eye disease screenings and low-cost eyeglasses. A participant in the program emphasized that individuals without insurance just don’t get their eyes checked, even with chronic conditions like glaucoma or diabetes, and another said, “if this program didn’t exist, I wouldn’t know what my eye health looked like.” Lipton and colleagues have shown that those with Medicaid who have vision coverage for eyeglasses were 17% more likely to have seen an eye doctor in the past year and 35% less likely to have a functional limitation due to vision compared to those without insurance coverage for eyeglasses.¹⁸ In the landmark study by RAND randomizing participants to a cost-sharing insurance plan vs. a free services insurance plan, participants with low income who were randomized to the cost-sharing group were less likely to utilize appropriate medical care when compared to the free services insurance plan group.¹⁹ Appropriate utilization of vision and eye care services would be enabled if vision care, including eyeglasses and eye disease screening exams, was part of covered care through standard medical insurance plans instead of having these benefits siloed off into vision insurance plans. That strategy has the, potential to mitigate adverse health outcomes associated with poor visual acuity.²⁰

Transportation was a significant barrier to utilizing eye care. In prior work, 34.8% of patients included in a study at the free clinic reported that transportation was the reason they missed their free eye care appointment .²¹ Nearly one-quarter (24.0%) of counties in the United States do not have an ophthalmologist or optometrist, so it is somewhat common for people to travel long distances for eye care.²² Additionally, limited reliable public transportation can heighten the effects of this barrier, a known barrier in the state of Michigan, where MI-SIGHT took place. Though Detroit, the state’s largest city and metro area, used to have one of the most robust streetcar public transit systems, it was dismantled in 1956 for a number of reasons, including a suburban design focused on automobiles and highways and decreased federal and state funding for public transportation.²³ In one community in Minnesota that added a new rail line to a clinic, the probability of outpatient clinic non-attendance dropped by 4.5% overall, from 11.1% to 6.6%,and dropped by 9.5% among patients insured by Medicaid, from 16.9% to 7.4% compared to the time period before the rail line was available.²⁴ In a clinic in Texas, covering patient bus fare and providing a shuttle bus from the bus station to the clinic decreased clinic non-attendance from 37% to 20%.²⁵ These studies demonstrate the power of investment in public infrastructure on public health outcomes. MI-SIGHT participants cited the convenience of the program as an important facilitator for participation, as both clinic locations were on the neighborhood bus route.

It is a common misconception that people do not utilize eye care because they do not care about their eye health or do not take their eye health seriously. When people do not seek medical care until they notice symptoms, healthcare providers comment, at times, that the person did not come to seek care soon enough. Among the MI-SIGHT participants, no one mentioned not valuing their vision as a barrier to utilizing eye care. On the contrary, some participants mentioned their motivation to receive eye health screening was due to watching a friend or family member lose vision. One participant said “[y]ou know, I have concerns because I have relatives who have glaucoma and because of my grandmother and my uncle. Both went blind.” Participants’ emotional drivers for avoiding treatment were centered around the stigma of not having insurance or the stigma of needing to ask for help, a known barrier also for receiving timely medical care in low-income families.²⁶ Allen and colleagues found that among people with low-income, insurance status can confer additional stigma, and that people reported feeling this stigma from their interactions with the provider.²⁷ Research has shown that if patients feel as if they are disrespected by their physician, they are more likely to delay obtaining medical care and less likely to follow advice.^28,29 Establishing rapport can help counter some of the concern around the stigma of not having insurance and build trust with the health care team.

The importance of building rapport and using effective communication in each participant encounter in the MI-SIGHT program must be underscored. The most widely cited themes from all participants interviewed were rapport and communication. When asked if they would return for another eye exam through MI-SIGHT in a year, one participant said, “The [technician] is very kind, like warm person in general… that’s the kind of person you would want to go see at a doctor’s office.” Rapport, empathy, and good communication from the provider lay the foundation for patients to share their medical problems easily and to be further engaged with their care, while dismissive behaviors from providers can often leave a patient feeling anxious.^30,31 Clear communication by the technicians in MI-SIGHT fostered a more comprehensive understanding of the patient’s condition, as one participant mentioned, “[The technician] takes her time. She breaks it down. If something doesn’t, you don’t understand, she will tell you in a way that you do understand, and she makes sure that you understand whatever it was that you didn’t understand.” A study spanning 11 countries surveyed patients on their health care experiences and found that the most engaged patients self-reported better quality healthcare, decreased rates of medical errors, and increased satisfaction with the health system.³² Participants who were randomized to receiving motivational interviewing-based coaching compared to those who received standard education cited more instances of rapport with the counselor (38 times vs 24 times) and more instances of positive experiences with glaucoma education (24 times vs 15 times). The quantitative analysis is underway on whether the MI-based coaching improved adherence to follow-up visit attendance compared to standard education, but the qualitative analysis demonstrates the importance of building rapport and facilitating intrinsic motivation in improving people’s experience with health education. Building rapport and using clear clinical communication are critical facilitators in improving engagement in healthcare. Developing a trusting relationship with both individual participants during a clinic visit and within the surrounding community is essential when establishing a new screening program like MI-SIGHT, especially in a community with high rates of poverty whose members may not have had positive experiences with health care providers in the past.

One limitation of this study was that participants were given a $20 incentive to take part in the interviews, and this may have influenced their willingness to share negative feedback about the MI-SIGHT program with the researchers as the incentive may have influenced their desire to please the researchers. However, the $20 incentive payment also yielded 100% participation from all subjects approached, limiting non-response bias. Additionally, satisfaction scores were very high for the entire cohort where 97.7% of MI-SIGHT participants reported being either satisfied or very satisfied with the program; the high expressions of satisfaction among the participants included in the qualitative analysis appear to be representative of the entire sample. Furthermore, the interviews were conducted between October 2021 and December 2021, during the ongoing COVID-19 pandemic. The pandemic brought upon clinic closures, social distancing, massive layoffs, and social isolation.³³ While the impact of COVID-19 was not an aim of the interviews, we acknowledge that the pandemic may have shaped participants’ recent attitudes and experiences within the healthcare system.

The strengths of this assessment include the purposive sampling of the first 42 participants in the two-month window during which interviews were conducted who met inclusion criteria – representation from both clinical sites, from those who did and did not have glaucoma, and from those who did and did not participate in the personalized education and glaucoma coaching program. Additionally, the study design – semi-structured interviews - was a strength as qualitative research delves into the “hows?” and the “whys?” of a participant’s subjective experience and gives context to the complex sociocultural factors affecting health behavior. For example, this study gives a much richer and more nuanced understanding of what a 97% program satisfaction rate means.^34,35

Using community-engaged research to develop an eye health screening and treatment program resulted in high levels of program engagement and program satisfaction. Being able to address previous barriers to eye care utilization such as being able to develop rapport and trust with participants was crucial to program satisfaction and the resulting word-of-mouth that bolstered community participation. Understanding the nuanced experiences of participants in a novel screening program like MI-SIGHT is useful to assess the program’s future sustainability in terms of continued patient engagement.