Public Health Can Reframe Debate about Minority Healthcare
Minorities in the U.S. get less and less adequate care than non-minorities Margarita Alegria, director of the Center for Multicultural Mental Health Research and a professor at Harvard Medical School, told the Oregon Public Health Association’s annual conference. To address the problem, public health needs to re-frame the debate.
“We’ve concentrated on race and ethnicity too long,” said Alegria. “I think it has to do more with being a minority and how people react to you as ‘the other’.”
She cited research on patient and clinician interaction that shows “who saw you mattered on what diagnosis you got,” adding that bias happened both ways. Patients thought providers earned more than they do.
“Providers can’t ‘get’ you when you have an accent. They have to put more effort into figuring you out,” she said, adding that who is a minority will depend on where you live. By 2043, she said non-Latino whites will be in the minority in the U.S.
Gloria Krahn, a national expert on disabilities now with the Oregon State University College of Public Health and Human Sciences, echoed the theme of the movement between “in and out groups,” pointing out that “we are all temporarily able-bodied.”
Back in her small Canadian hometown, several of her extended family members endured mental and physical disabilities, and Krahn described herself as “blessed to grow up with disability inclusion.”
Currently, she said, more than 12 percent of the U.S. population reports one or more disability related to mobility, seeing, hearing, problem-solving or other conditions that increase dependence.
Krahn urged public health workers to plan for inclusion, reminding them that just because certain facilities meet ADA accessibility criteria, they may not have proper equipment for such basics as weighing a wheelchair-bound patient. She cited high rates of smoking among disabled populations and reminded anyone with a tobacco cessation program to realize that unless the disabled are included, the program is likely missing 30 percent of the smoking population.
Maybe most disturbingly, she reminded those preparing for disasters that 38 percent of those who did not evacuate during Hurricane Katrina had disabilities or were their caretakers.
“The poor health of people with disabilities has moved beyond a ‘given’ to the ‘intolerable’,” Krahn said.
There’s also a lack of understanding by patients and healthcare providers about new genetic tests that screen for breast, colon and ovarian cancer, according to officials who spoke at the Oregon Public Health Association’s annual conference – sometimes with the wrong people wanting the tests.
Surveys show that less than 30 percent of women with an increased risk from a family history of breast or ovarian cancer wanted the screening, while 16 percent of women with no increased risk asked for the test, which is “way too high a rate,” said Summer Cox, coordinator of the Oregon Health Authority’s Oregon Genetics Program. “Genetics are thought to be 60 percent of the cause for breast and ovarian cancer. We have huge room for improvement.”
Also, “very concerning was that 63 percent of the women who had genetic counseling had not heard about this test,” Cox said because healthcare providers aren’t prepared to handle the complexity and volume of counseling and testing. To combat the problem, OHA is preparing education modules for providers.
Insurers could find such information useful even if they don’t cover the entire family. Maybe a 20-year-old with many red flags throughout her family should get mammograms earlier and more often than others her age?
But genomics also raises questions. “If I get tested, I implicitly make a decision with ripples out to my family,” said Katherine Bradley a professor of nursing at OHSU. Should consent be broader? What about storage of information for the next generation? What about privacy? “Genetic info can be powerful for employers and insurers,” Bradley said, with financial implications driving decisions.
The complications increase with incidental findings, said David Koeller, medical director for OHSU’s Metabolic Clinic and a professor of molecular and medical genetics and pediatrics. “Three percent have incidental findings. That’s a lot of people.” Those genetic mutations may be for untreatable conditions or adult-onset conditions in children that raise ethical and other questions.
Yet Koeller said, for patients with rare diseases, the DNA screening can reduce the “diagnostic odyssey” that takes those with unusual symptoms from test to test.
Gregory Fowler, a professor in the School of Community Health at Portland State University, said “big data is being pumped out with a fire hose” and public health practitioners will be among those building policies and competencies for the future.