Race, Ethnicity and Patient Engagement

flying cadeuciiA few years ago, I was upgraded to First Class on a flight from California back to Chicago. Not long after I settled in, a tall, muscular man easily four inches taller than me walked up to my aisle seat in the first row and prepared to sit by the window.

I envisioned him spending hours hemmed in by the bulkhead and offered to switch places. We began to talk, and soon he shared that his seatmates often hesitate to engage him in conversation. Women and even some men will turn or stiffen in their seats in order to send a clear body-language message.

That’s what happens when you’re a large, physically imposing black guy. People make assumptions. When it comes to patient engagement, we often make assumptions, too.

We minimize the influence of race, gender and ethnicity, or we confuse it with socio-economic status. We assume that “people like us” have communication preferences like us. We downplay the doctor-patient relationship and overemphasize technology.

Race and Ethnicity Matter

In truth, race and ethnicity matter as much in medicine as in the rest of the society. For example, whites, African-Americans and Latinos share the same expectations of their physicians, a study in Health Services Research found, but “patients from different racial and ethnic groups report differing experiences…when using well-validated measurement tools.” Translation: the perception reflects reality.

separate study of low-income children at a clinic found that minorities and those without private insurance were less likely than whites and the privately-insured to return satisfaction surveys in the first place. Certainly, patient engagement is easier when you and your doctor start out as demographic partners. My seatmate’s experience in airplanes also plays out in exam rooms. “Physicians were more contentious with black patients, whom they also perceived as less effective communicators and less satisfied,” is how a study in Social Science and Medicine put it.

Implications for Engagement and Activation

“Blacks and Hispanics generally perceive their role relationships with physicians to be less equitable than do whites,” concluded a Medical Care Research and Review article examining the influence of race and ethnicity on patient activation. If activation refers to an individual’s underlying willingness to take an active role in his or her health, “being a minority often increases the traditional role distinctions seen between physicians and patients when both are white.”

Hispanics, meanwhile, seem less sensitive than whites to “equity” in the relationship, with activation possibly affected more by characteristics such as compassion, caring and sensitivity to language and to culture. (Where do I sign up? Do I need to speak Spanish?)

Other differences among patients also matter. A collaborative relationship with the doctor may affect women’s medication adherence more than men’s. In addition, Asian-Americans are often lumped together into one big category (as are Hispanics, of course), when distinct ethnic groups have distinct cultures that influence health literacy, the desire to share in decision-making and other important characteristics.

A “Power Imbalance”

All patients of all kinds do share one thing in common: whatever your beliefs about speaking up to the doctor, actually doing so is something else entirely. Even affluent and well-educated patients in the ethnically-diverse San Francisco Bay area felt “compelled to conform to socially-sanctioned roles and defer to physicians during clinician consultations” for fear of being characterized as “difficult,” a Health Affairs study found.

Or, as a systematic review of patient-reported barriers to shared decision-making put it, a key problem is “the power imbalance in the doctor-patient relationship….[K]knowledge alone is insufficient, and power is more difficult to attain.” I agree; the bottom line of patient-centeredness is sharing power.

Race, Ethnicity and Gender Aside

Moreover, there are important differences among patients that have nothing to do with race, ethnicity or gender. As we circulate among the engaged and activated, we should remember that not everyone aspires to that status. The consulting firm Deloitte identified six unique consumer segments: casual & cautious; content & compliant; online & onboard; sick & savvy; out & about; and shop & save. Interestingly, a review of survey data from 2008 to 2012 found that both the most disengaged segment (casual & cautious) and one of the most active segments (online & onboard) both had grown; however, the least involved grew the most (11 percent vs. 2 percent).

Although race still matters (and not just in health care), and although it is still linked to disparities in chronic health outcomes in diseases such as cancer, obesity and diabetes, differences can diminish significantly online. A detailed analysis of eHealth use by socio-demographic factors such as race/ethnicity; socioeconomic status; age and sex found no evidence of a digital divide driven by race or ethnicity. Instead, it was class, age and sex that counted. (And, as another study noted, language.)

Women were more likely to be health information seekers than men, the young more likely than the old and both men and women with a college education were more likely to track health information online than the less educated. My African-American airplane seatmate, Kevin Moore, a West Point graduate and successful corporate executive-turned-consultant, would not be surprised.

Overcoming Barriers

Nor do I think Moore would be surprised to hear that targeted communication (what one study calls “a values-affirmation exercise”) can overcome the barrier posed by unconscious stereotyping.  Turns out my seatmate was the author of a paperback book on race relations filled equally with candor and humor. (At the end of our long airplane conversation, he handed me a copy.)

Although there are many “unmentionables” in health care, race surely lingers near the top of the list. Successful engagement must begin with candor. “What would you do if you could ask any question you ever wanted to know about a group of people but were afraid to ask? Would you ask it?” Moore’s book provocatively inquires.

Moore is talking about blacks and whites in society at large. I think we who seek to improve provider-patient communication could follow that same prescription for all patients.

Michael L. Millenson, president of Health Quality Advisors LLC, Highland Park, IL, is a nationally recognized expert on quality of care improvement, patient-centered care and web-based health. He is the author of the critically acclaimed book, Demanding Medical Excellence: Doctors and Accountability in the Information Age, and he is Adjunct Associate Professor of Medicine in the Department of Medicine at Northwestern University’s Feinberg School of Medicine. National Public Radio called him “in the vanguard of the movement” to measure and improve American medicine. 

Prior to starting his own firm, Millenson was a principal in the health-care practice of a major human resources consulting firm. Before that, he was a health-care reporter for the Chicago Tribune, where he was nominated three times for a Pulitzer Prize. He serves on the boards of the American Medical Group Foundation and the American Journal of Medical Quality.

6 replies »

  1. Diversity, once traditionally defined as inborn differences such as race, gender, age, and physical ability, has now taken on a more inclusive model. Diversity now encompasses all ways individuals differ, including those aspects of diversity that can be acquired as well as changed during one’s life. In order to be successful in breaking barriers in diversity, organizations must take an active role in educating not only the physicians, but the entire clinical and nonclinical staff. Until cultural competence is achieved patient and physician engagement and activation will continue to suffer.

  2. Prejudice, or bias probably has some evolutionary benefit, ie, that guy who dresses differently , talks differently and carries different weapons is probably from a different tribe or clan and may be my enemy.
    These days, I think it is best to treat patients as fellow humans first and foremost, you can’t go wrong with that.

  3. Thank you for the insightful comments. It’s tough to disentangle race, ethnicity and class, but it’s important to remember that they are all separate elements. A little humility about our own biases helps. All negative stereotypes have some element of truth — that’s why ethnic humor works when it’s your own ethnicity/gender/race/religion telling the joke. But it’s important to remember “some” and “sometimes” and then get on to listening to people as individuals.

  4. This is a great post, Michael.

    In my experience, in America much of the problem has to do with our not (some people, anyway) not getting the distinction between race and class …

  5. “race and ethnicity matter as much in medicine as in the rest of the society.”

    It is easier to understand one’s own culture than the culture of another. That makes communication and thus diagnosis easier. It might also enhance the treatment options.

    In fact cultural differences involve how one has to approach end of life scenario and cancer as two big examples.

  6. If we do not remove barriers and we are not sensitive and unintimidating, in other words, we DO screw up, what is the medical penalty? How poorly do the patients do? How fragile and delicate are we? Maybe the cost benefit would show that it is better for the provider to spend his time being diagnostically and scientifically competent and remain a little rough around the edges.

    But thanks for the very well written article.

    I do think that medicine will have such delicious astounding offerings pretty soon, that folks will forget about providers who are a little ragged. E.g we are going to get a handle on aging for sure. It is just chemistry after all and some cells never age.

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