This blog post is the third in a series discussing how vulnerable segments of the US population interact with and experience the health care system. This research is part of the Robert Wood Johnson Foundation’s Right Place, Right Time initiative. The first post was published on Health Affairs Blog and the second on the Altarum Institute Blog.

For our Right Place, Right Time research initiative, launched in January 2016, we interviewed vulnerable patients, including low-income patients, the uninsured, family caregivers, and non-English speakers, to learn their most urgent concerns about the health care system and the information they need to make health decisions. We expected to hear that health care information was too confusing and price information was difficult to find—and we have—but the issue lower-income participants were most passionate about surprised us: they reported widespread distrust of the health care system and the feeling that they were seen as “less than” by health care professionals.

For many lower-income participants, trust and respect were their primary concern with the health care system, even more than the quality of the health care they received. Participants felt they were treated with less respect because of their income, insurance status, and race. This is consistent with past research finding that distrust in the health care system is high, and strongly associated with poor health.

In contrast, middle-income study participants did not report many negative experiences with providers, and those with negative interactions did not feel they were being targeted or discriminated against. It was as if lower- and middle-income patients had experienced two different health care systems.

Lower-income participants gave examples of a lack of trust and respect, including providers avoiding eye contact, speaking condescendingly, showing physical disgust when touching patients, brushing off patient concerns and symptoms, and ignoring adverse events that patients reported from prescribed treatments. Most of this criticism was directed at physicians of all types, and less directed at nurses and other provider types, who were perceived as having more in common with patients and as having no financial motivations in providing care. It was clear from participants’ descriptions that these events colored the entire patient experience and were highly influential in determining the care they later sought and received.

Medicaid Beneficiaries Report Poorer Treatment

Many participants felt that Medicaid beneficiaries were often not taken seriously, regardless of the symptoms they presented. One woman in a Michigan focus group recounted how a chiropractor she knew talked about Medicaid beneficiaries:

He would talk about how he didn’t want to be there if he had a Medicaid patient, that he just felt like they’re complaining… The way he talked about his patients, it was clear. It changed my view. That type of judgment — that really scared me. It scared me to go back on Medicaid, especially pregnant, … because I feel that … there are judgments made on people who have Medicaid.

Many participants also felt that their medical concerns were downplayed because of their insurance, and that they received better treatment when they had commercial insurance. This suggests some of the feelings of disrespect are a consequence of benefit design rather than characteristics of the patient (more on benefit design as an obstacle is in Oliver Wyman’s Marketplace Report). One participant noted:

I feel like if I had better insurance, I’d be treated better. Like when I had Blue Cross … they just wrote me [a] prescription for whatever I needed. I paid my $20.00 copay and I got whatever I wanted. With Medicaid, I have to explain myself a lot more.

Another noted:

You feel sometimes as though your symptoms are downplayed because of who you are and what your income or your status is.

These can be hard words to hear as a health care professional, but they are important. And these views were not just held by a few individuals, but by most lower-income study participants. Participants said they spent a significant amount of time searching for information about which providers would treat them well. They noted that they valued patient reviews because it was their only unfiltered window into what other patients like them had experienced.

Suspicion Of Financial Motivations

Many participants felt they were treated poorly specifically because of financial motivations in health care. For instance, many felt that physicians’ treatment decisions were motivated by financial incentives, such as kick-backs from drug companies. One participant described it this way:

A lot of the drug companies are paying the doctors. They get the doctors to promote certain medications. … Doctors get paid onsite.

While doctors are not paid for each prescription, there is some truth to participants’ concerns. A recent ProPublica investigation found that doctors that receive pharmaceutical industry money tend to prescribe more name-brand medications, and the more money the doctors received, the more they prescribed.

A woman in our Chicago focus group put her concerns about financial motivations even more bluntly:

It’s almost like they want you dead when you can’t afford medications.

This is a strong statement, but it was echoed by many others during our interviews. Participants wanted providers to consider patients’ ability to pay when prescribing medication or treatments. When providers did not consider and explain the cost of different treatments, participants often perceived their providers as not caring about their well-being. While middle-income patients also wanted financial information, they did not feel that its absence was antagonistic.

Health Impacts Of Poor Patient-Provider Relationships

The patient-provider relationship is not just a social nicety; it can have a direct impact on patient health. In prior research, HIV+ patients that trusted their providers were more likely to take their medication, and reported better physical and mental health. Further research has found distrust is a strong predictor of whether racial minorities seek out preventive care. In our project, we similarly found that past negative health care encounters led study participants to minimize their contact with all health care providers. For example, one participant noted:

I don’t trust them [doctors]. I feel like I can diagnose myself just as well, because I usually do. … Short of a dangling appendage, I pretty much rough it out or, I mean, I broke this collarbone five times, I broke this one once, and like two of the times I never even went because they don’t set it or anything; they just immobilize it. I knew there’s going to be some pain. We had good insurance, so that wasn’t the deal. It’s just a matter of trust.

A perceived lack of interaction and of shared decision making also led participants to be less adherent to their medications:

He [the doctor] sits over there, and I sit over here, and he’s just writing. He doesn’t look up at you, he don’t… nothing. You want interaction with your doctor because if he’s just … writing some prescriptions and saying what he wants, did he really see you? … He’d tell me I’ve got high blood pressure; he’d write me three different prescriptions, man. They just sit in my purse. … You never even came over here and touched me, man, how can you tell me that’s what I really need?

We do not always know which encounters will lead patients to feel this way, but the effect is clear: many lower-income patients disengage from health care altogether because they do not feel valued.

Recommendations For Improving Care Relationships With Patients

Providers may not realize that patients’ perceptions of how they are treated can have a long-term impact on medical adherence, willingness to receive care, and ultimately patient health. System-wide changes to benefit design may help with some of these problems. In addition, here are some steps providers could take to improve relationships with lower-income patients.

The basics

Simple gestures like introducing oneself, making eye contact, and showing genuine interest in patient well-being go a long way toward making patients feel respected. A lack of these simple interactions was often cited by participants as a big concern. Further, maximizing these interactions during an initial encounter can set the tone for the rest of the patient-provider relationship.

Listen to patient concerns

The feeling that patients’ medical concerns were not taken seriously often led to medical complications and abandonment of care, we learned from patients. Taking the time to listen to patients not only builds the patient-provider relationship, but also uncovers medically useful information such as symptoms or adverse reactions to treatments, or patient misinformation. Accumulated “relationship capital” can be used to effectively correct patient misconceptions gently and with sympathy.

Transparently share information

Patients often felt they were missing key information about the care they were receiving or learned this information too late to be of value. This included information about a treatments’ side effects and chance of success, non-medical alternatives to treatment, and financial costs. By sharing information as transparently as possible, providers not only inform patients, but build a sense of partnership and trust.

This is especially true of information about financial costs. When provider pay is perceived to be associated with treatment, this can contribute to suspicion about whether that treatment is in the patient’s best interests. Resources such as The Center for Medicare and Medicaid Services’ (CMS) Open Payments program help promote transparency, but most patients are unaware of these tools or are unlikely to access government reporting sites.

This same information may be more helpful distilled into a simple rating and incorporated into popular websites with provider information. Trust could also be gained by actively considering patient ability to pay when prescribing medications or making referrals, such as at community clinics that incorporate sliding scale payment models and financial consultations.

Invite shared decision making

Many lower-income patients felt their attempts to engage with their health care were dismissed or seen as a challenge to the provider’s authority — and that medical decisions were made for them rather than with them or by them. Our participants expressed a strong desire for shared decision making, and indicated they were more likely to be adherent to shared treatment decisions. Providers can collaborate with patients towards a care plan that both engages patients and respects their preferences. The Affordable Care Act calls for greater use of shared decision making in health care, but relatively little progress has been made. A national certifying system could help standardize patient decision aids, and CMS reimbursements could be tied to appropriate use of these tools.

These actions may seem small or incidental to the vital medical care that patients seek, but to many patients, they are the difference in whether that patient will seek out medical care when they need it most. The Right Place, Right Time project will continue to release recommendations for improving health information for vulnerable patients and building positive patient-provider relationships.