Medical Mistrust: Repairing the Damage from Negative Experiences

The American healthcare system has a problem with trust. According to the American Board of Internal Medicine (ABIM), research has shown a significant decline in physicians’ trust in healthcare leaders during the Covid-19 pandemic and notable differences between how physicians and the public perceive trust. Further, experiences of discrimination also negatively affect trust in US healthcare.

Some patient populations are more distrusting of the healthcare system than others, and justifiably so. Historic inequalities, baked into the system, have resulted in discriminatory practices that often leave the most vulnerable people with the most negative patient experiences. However, a population that does not trust its healthcare system is more susceptible to poor health outcomes. Health leaders owe their patients better.

Rebuilding trust is a multi-step process. Platitudes reassure only those who utter them. But some of the more innovative health systems are implementing robust new ideas. Read on to learn more about how healthcare leaders are addressing medical mistrust and working to repair the damage from negative patient experiences.

Dr. Greg Burke is Chief Patient Experience Officer for Geisinger Health System, a role he’s held since 2014. He’s also practiced internal medicine at Geisinger since 1992. He is a graduate of Jefferson Medical College. He completed his internal medicine residency and his chief residency at Thomas Jefferson University Hospital.

Dr. Burke actively lectures and publishes articles in the fields of medical ethics, patient experience, and spirituality in medicine. His awards include the Clinical Excellence Award for HealthSouth (2009), Best Doctors in America (2007-8, 2011-12, 2017-18, and 2019-20), the Victor Marks Service Excellence Award (2007 and 2013), and the Papal Medal Benemerenti Award (2007).

“We do sense the loss of trust,” Dr. Burke says. “During the Covid-19 pandemic, the disagreements around treatments and approaches didn’t help. But mistrust was already there, and exacerbated in certain communities.”

Some level of mistrust is justifiable. Black Americans have been repeatedly mistreated in both subtle and egregious ways by the US healthcare system since its inception. Women, people of color, and members of the LGBTQIA+ community all experience minor and major discriminations of the conscious and unconscious variety. In recent years, the mistrust has spread to different socioeconomic and political demographics.

The consequences of medical mistrust are significant. Patients who need certain treatments may not seek them; preventative services are less sought out. Health outcomes, and patient experiences, inevitably suffer, causing further entrenchment of mistrust. Furthermore, research shows that poor patient experience leads to a decrease in job satisfaction for healthcare providers. It’s a vicious cycle. But the inverse—rebuilding trust and prioritizing positive patient experiences—creates a virtuous loop.

“If a patient has good experiences in healthcare, they build trust, they like their provider, they have good relationships, and the provider is happier with that relationship, and their personal engagement goes up,” Dr. Burke says. “This whole circle of patient experience is quite important. If we don’t have trust with the public, the clinician is also going to be affected by that in a negative way: be less engaged, less enthusiastic in their work, and less idealistic.”

Under CMS rules, hospitals are required to survey patients regularly. Health systems like Geisinger use that survey data to get a pulse on how they’re doing and where the pain points are in patients’ experience. For Geisinger, approximately 70 percent of the complaints they get from patients are related to communication issues.

“The best way to solve a problem is avoid it in the first place,” Dr. Burke says. “For us, it’s trying to standardize a communications technique for everybody in the health system, everyone from the CEO down to someone working in the hospital cafeteria. There’s an expectation that they follow a certain communication style. That they connect with people directly. That they introduce themselves, explain their role, ask permission, respond to patient or family requests, and try to end in an upbeat and optimistic way. That communication standard is a passport to success. Effective communication and human relationships are the basis of healthcare. We have to continually come back to that.”

Not every negative experience can be prevented. But those that occur can be compassionately and clearly addressed. To that end, Geisinger has, since 2016, taken a bold and idealistic approach with its ProvenExperience program. Simply put, the ProvenExperience program says any patient can receive a refund for any Geisinger service that they feel resulted in a negative experience—no questions asked.

“No health system in history had done that before,” Dr. Burke says. “But it was the foundation of rebuilding trust. There was skin in the game. It wasn’t just about finance.”

At first, Geisinger received pushback about its refund program. Some parts of medical treatment, critics said, were destined to be uncomfortable. As a nonprofit, Geisinger had a fiduciary responsibility to reinvest its money—and how could it afford to reimburse any and every minor patient complaint?

But putting trust back in the patients turned out to be a savvy business decision. Some patients requested only partial or minimal reimbursement. The total cost to Geisinger ran less than a million dollars a year, and was similar to what Geisinger was already, less publicly, refunding to its patients.

“They put their trust in us, so we put our trust in them,” Dr. Burke says.

Geisinger is still running its ProvenExperience program. At least one other health system has already adopted it. Others are flirting with implementing similar versions of the idea.

“I think there’s a future in it,” Dr. Burke says. “Consumerism has entered healthcare. It only makes sense that successful businesses will be comfortable letting their users know they can ask for refunds.”

The gears of American healthcare are too often focused solely on curing illness. That find-it-and-fix-it approach is effective, but homogenizing: it treats bodies, not people. However, prioritizing positive patient experiences can be a driver of good health outcomes. It can rebuild trust between health systems, providers, patients, and their communities. Rethinking patient experience amounts to no less than rethinking the healthcare system itself.

“To me, patient experience is the sum total of the patient’s emotional and intellectual connection to their experience in healthcare,” Dr. Burke says. “And it is very broad. It could include everything from phone messaging, emails from the health system, interactions with the pharmacist, all the way up to those critical one-on-ones with their provider, their inpatient stay in a hospital, their post-discharge experience in a skilled nursing facility or home health service, and finally the way they receive the bill and how it’s handled. That totality of experience affects all of it.”

Repairing the damage from negative patient experiences also requires proactive steps to prevent those experiences from happening in the future. To that end, Geisinger won a $10,000 grant from the ABIM to design a curriculum that promotes awareness of bias in healthcare, and bridges specific knowledge and skill gaps in the delivery of culturally competent services. The curriculum includes didactic material related to health disparities and particular issues of concern for diverse populations, as well as sessions with standardized patients.

In the future, Dr. Burke sees patient experience adopting some of the principles and practices of the hospitality industry. Just as customers are put at the center of the American service industry, patients can be welcomed with respect and gratitude in the healthcare industry. That human touch, and offering to give patients a little trust before asking for it back, can pay dividends.

“At the highest level, we’re supposed to do the right thing for all patients,” Dr. Burke says. “That’s the Hippocratic Oath, the traditional understanding in Western medicine. Where we’ve failed, regaining that trust is going to be difficult. But that’s always been the aspiration in medicine.”