text: Enfield Clubhouse is a small independent charity set up to help people with mental illness recover purposeful lives in the community. We aim to help people with the most severe and enduring mental health problems such a schizophrenia, bi-polar disorder (or manic depression), psychotic depression and anxiety disorders find and sustain meaningful work, social lives and supportive relationships.
  Enfield Clubhouse has been operational since March 2006 and currently opens two days a week (Wednesdays and Fridays)
  Volunteering is a great way to gain pre-work experience or of helping to fill up those retirement hours, whilst also enabling you to make a satisfying & fulfilling contribution to your community.
  Volunteers can make a valuable contribution to the daily functioning of Clubhouse by bringing a specialist skill, providing specialist advice, or by supporting and encouraging individual members in their chosen activities.
  A 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.
  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.
  A 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.
  “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.
  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.
  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.
  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, excellent post on any important and underappreciated issue. I think that the Deloitte “consumer segmentation” or patient profiles points the way to much more useful categorization or stratification of patients to tailor programs, materials, and engagement approaches.