UChicago researcher documents dramatic shortcomings tracking American Muslim health disparities

20120613_Padela_3341Islam is the world’s second-largest religion, but in the United States, few health researchers are taking the time to study the diverse and quickly growing American Muslim community.

That’s a troubling and deeply personal problem for Aasim Padela, MD, an assistant professor of medicine and bioethicist at the University of Chicago Medicine who also runs the University’s Initiative on Islam and Medicine. Without data on the group, which the Council on American-Islamic Relations pegs at 7 million strong, American Muslim patients ultimately may be at risk for poor quality health care and health disparities that go largely unrecognized.

“There should be research conducted on the impact of discrimination on health in this group, there should be research on how religion influences this group’s health seeking patterns, and we should compare that with other groups to assess health differences. But there’s very little being done,” Padela said in an interview with Science Life. “The fact is that we’re in the post-9/11 world and there’s something on the news every day about Muslims. That can create a fearful environment for interaction with health care. But in the area of health disparities among American Muslims, we know very little.”

So little, in fact, that when Padela and a colleague at the University of Michigan Medical School tried to do an initial search of 18 million research studies published in medical journals between 1980 and 2009 they found only 10 that included the terms “American,” “Muslim,” Islam,” “health care” and “health disparity.”

After expanding their search to include words that are associated with people from Muslim-majority nations, such as “Indonesian,” or related ethnic identities, such as “Arab,” they were able to increase the number of studies on the topic to 171.

That’s just not enough about any population, particularly one that comprises more than 5 million people in the United States,” Padela said.

The findings of their work, “American Muslim Health Disparities: The State of the Medline Literature,” were published April 1 in the Journal of Health Disparities Research and Practice.

Science Life asked Padela, who is also a faculty member at the MacLean Center for Clinical Medical Ethics, to expand on his latest research – he’s published extensively on American Muslim health disparities over the past eight years – and discuss whether Islamophobia is behind the lack of research on a group, which despite different races, ethnicities and socio-economic backgrounds, remains bound by faith.

Science Life: What’s the easiest way to explain the findings of your latest research?

Aasim Padela: We know very little about American Muslim health in general. The idea of researching the ways religion influences people’s health and influences the disparities between different groups of people requires much more attention from health researchers.

What we do know is that there seems to be some areas where American Muslims are different than other populations in terms of the way they experience health care. For example, American Muslims seem subject to discrimination. That influences the way they’re interacting with the health care system. And religion influences Muslims across race and ethnicity. So South Asian, African-American and Arab Muslims think about health and healing in a certain way based on their religious beliefs and values.

SL: You’ve said that after 9/11, having a Muslim identity exposes patients to discrimination, which also impacts their health behaviors and outcomes. How so?

AP: In our national survey of American Muslim physicians we documented that nine percent of physicians had patients refuse their care simply because the doctor was a Muslim. I had the same experience myself as an emergency medicine resident. They’d tell the attending, “I don’t want to be taken care of by a terrorist.” Patients may feel uncomfortable with a Muslim-appearing physician taking care of them. If a patient feels uncomfortable with a certain physician, would they want to go back to that hospital? The next time they need to go to the emergency department, they might not come back, or they might not access care that they need. So it’s not just Muslim patients, but also Muslim physicians who encounter discrimination in health care.

Similarly for Muslim patients, women who wear the hijab say they feel discriminated against. Just a few days ago, someone texted me and said “I went to the doctor and I was wearing a hijab and they assumed I didn’t speak English and they wouldn’t let me choose a female doctor.” If you feel constrained as a American Muslim, or if people think of you differently or that at you don’t speak English, you won’t feel comfortable going to that primary care office. So maybe you’ll delay your care. Muslim women, in our Chicago-based survey we found that over 50 percent of them have delayed seeking care because they weren’t able to find a female provider.

The other thing I’ll say is that if you get into the health care environment, but you feel people don’t respect your faith, you’re not necessarily going to share aspects of what may be important to you. If you have a patient who feels a doctor isn’t open to conversations about religion and they’re making decisions about end of life care and DNR (do not resuscitate orders), do you think you’ll really be able to say “my religious values suggest I should do this?” Do you think you’ll really be able to have space to have that conversation? You can’t have the frank conversation to let the physician know about your values if you don’t think the physician will understand your values.

SL: A lot of this could be said for other minority groups, or, say Orthodox Jews. But you’re saying the issues are particularly compounded for Muslim Americans?

AP: That’s the point. African-American communities have faced discrimination and racism in this country for a long time. And we have a lot of data about how racism has impacted their health and their access to the health care system. In bioethics, we talk a lot about Jehovah’s Witnesses and Orthodox Jews, and what’s permissible in terms of treatments they accept and what sorts of cultural modifications we may provide. In this American Muslim population, you have both issues. But no one is looking at this population.

SL: Why isn’t there more research being done? Islamophobia? Because Muslims aren’t necessarily part of the same ethnic group, so there’s less likely to be genetic connections? Not enough interest from researchers?

AP: I don’t have a data-driven answer for that, but I think all the things apply. We don’t have good assessment tools because the population is diverse and hard to understand, thus research is harder to conduct. And there is an element that they’re viewed as being “just too different.” You can think about an Afghani Muslim who just came to the United States, versus someone who’s from Dearborn, Mich., who’s been here for three generations. They’re very different and people don’t immediately assume that religious values can influence their health similarly. From the social-political side, there are challenges as well. This population in not highly connected to the centers of pioneering health research or health policy think-tanks. And is there an unconscious bias or Islamophobia? I think there is. I, personally, as an academic have experienced it. I’ve also had experiences where I’ve submitted grants and I’ve had people say “they’re not an important enough population to look at.” Why are they not important and why are others? Is there some unconscious reason? Is there some unconscious bias that informs choices about not wanting to spend public health dollars on a “fringe group?”

SL: While you’ve built your career studying these disparities, how much other research is going on in this field? Is there a way to quantify it?

AP: Quantifying what’s going on is part of the reasons we wrote this paper. We just don’t know much about this population. From a social justice perspective we should. From a research perspective to learn things, we should. Health care disparities are researched across race, ethnicity, against rural and non-rural residential status and even among people of alternate sexual orientations. But not across religion. I think that’s a failure. It’s a failure in the United States when we want to include and think about disparities across all these different markers that we don’t look at religion.

SL: Are you saying there’s not enough research that’s being done on the impact of religion on health, or that the problem is particular acute in the Muslim American population?

AP: I’m saying it’s particularly acute for the Muslim population. There are literally manuals of spiritual assessment tools for health care providers. But they have religiosity measures and assessment techniques that are drawn from Protestant and Christian ideologies. These tools are not culturally-specific or religiously adapted such that they are meaningful for Muslim community research or for health care delivery.

The sliver of what is Muslim health research is extremely small. Yet after Christians, Islam is the No. 2 religion in the world. There’s very little research that looks at that connection for a major global population and one that’s a significant minority population in a lot of western counties.

SL: Does your own faith allow you to better access this community? To tell their story more authentically or collect empirical evidence in a more accurate way?

AP: Being a practicing Muslim allows me access to mosque communities. I go there and this is my social circle. I’m not someone from a different faith community. I often give sermons. I have studied Islamic law. So when I talk to imams or religious scholars, we can have a more nuanced conversation. They don’t have to explain terms to me. When I research and develop tools, I can do that in a way that’s more grounded in the faith. But also in a way that’s relevant to the Muslim community. That is my local social and moral world. I can do research there with, potentially, less barriers and greater awareness than people who are not from the community. I think that’s a unique vantage point, and I bear the burdens of having one foot in the community and one foot in the academy and having to bring them both together.

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