How Eye-Opening Experiences Shape Our Trust in Healthcare

HST 401-A

Alex Stapkowitz

2/12/25

How Eye-Opening Experiences Shape Our Trust in Healthcare

In 2022, I was diagnosed with a disease in my left eye called keratoconus. Although it sounds worse than it is, it’s basically a condition in which the cornea starts to thin and bulge slightly outward into a cone-like shape.

Normal Cornea vs. Keratoconic Cornea

As the disease was accelerating the decline of my vision, my eye doctor recommended me for an hour-long surgery called corneal cross-linking (CXL). Being the only treatment that could stop my keratoconus from progressing, I followed my doctor’s recommendation knowing that not taking immediate action could result in a more complex and costly procedure later in my life. The surgery itself was very uncomfortable, as my eye was held open with metal rungs for the entire procedure of strengthening the corneal tissue in my eye with UV light and a vitamin called riboflavin.

Eye during CXL Procedure

The initial outcome of the surgery was positive (thankfully), as my vision stabilized, discomfort subsided, and the astigmatism in my left eye disappeared (which was unexpected). But what still bothers me is that after the surgery on my left eye, the doctor expressed an interest in the CXL procedure for my right eye, which several other doctors have said is healthy to this day (not exhibiting rapid shape or vision decline). So why is my right eye all of the sudden a candidate for CXL surgery? Is the doctor looking to make some extra money off of me?

Such experiences have not just raised skepticism in the healthcare industry for me personally, but they have contributed to a growing sense of skepticism and mistrust in healthcare across the country. According to a national PLOS One Journal poll concerning overtreatment, “most respondents [70.8%] believed that physicians are more likely to perform unnecessary procedures when they profit from them” (Lyu et al., 2017). While CXL treatment certainly doesn’t top the list for being the most expensive medical procedure ($2500-$4000 per eye), there’s still money to be made from follow-up visits and prescribed eyedrops that reduce post-surgery discomfort.

Based on Northeastern University’s fifty state poll of American adults, “public trust in physicians and hospitals plummeted, going from 71.5% in April 2020 to 40.1% in January 2024” (Hibbert, 2024). When taking the COVID-19 pandemic into account with this data, we can gain a good sense of some reasons why healthcare mistrust has grown. Whether it was the abundance of misinformation, politicization of vaccines and lockdowns, or the changing protocols throughout the pandemic, many people became skeptical about what to believe and what not to believe. But outside of COVID-19, how does healthcare skepticism and mistrust start in the first place and spread throughout society?

Having a negative medical experience can lead to a change in behavior and ultimately trigger the initial skepticism that shapes a greater sense of long-term mistrust. According to a study published in the National Library of Medicine, “on average, individuals reported changing 4.6 behaviors as a result of a negative healthcare experience, and 88% of individuals reported changing at least one behavior” (Schwei et al., 2016).

Furthermore, out of 160 diverse respondents, “the four most commonly changed behaviors were ‘changed doctors or went for treatment elsewhere’ [63.8%], ‘changed hospitals or clinics’ [56.9%], ‘stopped going to the doctor as often as you should’ [53.4%], and ‘did not return for your next medical appointment’ [46.9%]” (Schwei et al., 2016).

When it comes to mistrust, the results show that a negative experience can impact people beyond just switching doctors or clinics. For example, I find myself visiting my primary care physician less now than in the past as a result of unexpected out-of-pocket expenses that I have faced. Knowing that my insurance may not cover additional tests or screenings suggested by my doctor, developing healthcare skepticism concerning coverage and the doctor’s procedures becomes a whole lot easier.

But healthcare mistrust isn’t always about money. With the shortage of doctors and other healthcare professionals such as nurses (especially during the pandemic), there’s been an increased amount of pressure on them when handling larger quantities of patients. As a patient, I’ve felt skeptical at times about the quality of appointments after getting less face-to-face time with the doctor. So how does healthcare mistrust escalate from just a personal experience to millions of people expressing dissatisfaction?

You guessed it. The media. When it comes to the media, “people are bombarded with medical news stories, television and radio talk shows, social media, pop culture magazines, spurious websites, direct-to-consumer drug and medical device ads, hospital marketing messages and other media sources, much of which are incomplete or wildly inaccurate” (Ioannidis et al., 2017). I agree with Ioannidis in that families do often lack accurate and relevant evidence or guidance during medical decision-making, making them more vulnerable to misinformation. Since these families don’t have much to base their decisions on, most will find comfort in past family experiences or in social media stories. Social media in particular gives people the platform to share their individual medical stories (even if they’re negative) with a potentially large group of people. Doing so in a way that expresses skepticism, mistrust, or pain has the potential to draw new attention to a treatment.

For example, LASIK eye surgery has been around for a while and has always had risks as well as critics. But it has generally received a positive connotation for correcting vision. However, in recent years, I’ve come across several instances of popular YouTubers who received the surgery and walked their online audience through some of the permanent damage or side effects that they personally experienced. These YouTubers, some of which never discuss anything medical-related on their channels, are able to draw more attention to LASIK and potentially influence those with minimal knowledge on it to not trust it.

Going back to my particular experience with Keratoconus, the CXL treatment was successful in stabilizing my vision and will hopefully eliminate the need for a more complex surgery in the future. But the overall experience provided me with more insight into how even a small negative aspect of a healthcare experience can spread and result in skepticism or long-term mistrust.

 

References

Hibbert, Cynthia McCormick. “Trust in Physicians and Hospitals Plummeted since the Covid Pandemic, Northeastern Research Says.” Northeastern Global News, 7 Aug. 2024, news.northeastern.edu/2024/08/07/trust-in-physicians-hospitals-research/.

Ioannidis, John P., et al. “How to survive the medical misinformation mess.” European Journal of Clinical Investigation, vol. 47, no. 11, 28 Sept. 2017, pp. 795–802, https://doi.org/10.1111/eci.12834.

Lyu, Heather, et al. “Overtreatment in the United States.” PLOS ONE, vol. 12, no. 9, 6 Sept. 2017, https://doi.org/10.1371/journal.pone.0181970.

Schwei, Rebecca J., et al. “Perceptions of negative health-care experiences and self-reported health behavior change in three racial and ethnic groups.” Ethnicity & Health, vol. 22, no. 2, 17 Oct. 2016, pp. 156–168, https://doi.org/10.1080/13557858.2016.1244621.