Clinical trials might help determine why a third say they don't feel well, compared with less than a 10th of non-Hispanic white women
By Patty Pensa, Special to the Tribune
June 29, 2011
Illinois' number of Hispanic women reporting that they were in fair or poor health was the highest in the nation, according to a 2009 study, and efforts are growing to figure out why.
Researchers want specifics on why 34.3 percent of Latino women in Illinois said their health was not good, compared with about 8.5 percent of non-Hispanic white women, in the study by the Henry J. Kaiser Family Foundation. Hispanic women in the state also have higher rates than non-Hispanic white women of diabetes, cardiovascular disease and obesity, according to the study. But enlisting people to be studied can be complicated by a distrust of medical research and an inability to overcome language barriers and other concerns.
Northwestern University's Feinberg School of Medicine is taking a step toward finding answers through a recently launched Spanish-language version of its Illinois Women's Health Registry. The idea is to boost the number of Hispanic women who participate in clinical trials and provide data to help researchers understand their health needs and access to care.
"It will really give us the statistical power we need for analysis of ethnic differences," said Candace Tingen, director of research programs at Northwestern's Institute of Women's Health Research. "There's a strong desire among Illinois women to join research trials, but we knew the language barrier might be a problem for Hispanic women."
Almost 6,300 women have joined the registry since it began in 2008, but only 4 percent describe themselves as Hispanic. The registry's Spanish-language website, whr.northwestern.edu/es, went live in May.Tingen hopes to attract 1,000 Hispanic women to the registry in the next year. Building up the number of Hispanic women involved is crucial to gaining a better understanding of their health across the state, she said.
The disparities between ethnic groups are striking. Hispanic women in Illinois have a 9 percent rate of diabetes compared with the 3 percent rate among non-Hispanic white women, and about 4 percent of Hispanic women have cardiovascular disease while fewer than 2 percent of non-Hispanic white women do, the Kaiser Foundation study says.
In addition, about 30 percent of Hispanic women in Illinois are obese compared with about 21 percent of non-Hispanic white women, the study says.
Contributing factors are inadequate access to and use of health care, a lack of health insurance, lower socioeconomic status and lower levels of education.
"We need to have better planning and coordination," said Esther Sciammarella, director of the Chicago Hispanic Health Coalition, "to make sure we help people reach the services they need."
Sciammarella, who advocates for a "good state plan" to tackle health disparities in Illinois, said her coalition will promote Northwestern's effort to reach Hispanic women. Involving them in clinical trials allows access to the latest treatments and quality care, she said.
Northwestern has matched women already in the registry with about 20 clinical trials, including studies related to hearing, fertility, postpartum depression, osteoarthritis, HIV, menopause and gestational diabetes.
In the past, women were excluded from clinical research, but the National Institutes of Health Revitalization Act of 1993 requires women and minorities to be included unless their involvement is inappropriate for the purpose of the research or the health of the subjects.
On its website, the registry poses these questions: "Why do some diseases affect women more than men? Why do women respond to some drugs and treatment therapies differently than men? What environmental factors and behaviors most influence women's health? We don't know. But we want to find out. And we need your help."
"We make the connection between women and researcher, disallowing any excuse for researchers not to include women," Tingen said. "We want to do the same for Spanish-speaking women. They're hard to recruit because they're often hard to reach."
The registry intends to focus recruitment efforts on church groups and other small-group gatherings, but Northwestern's Institute of Women's Health Research does not have funding to hire a Spanish-speaking community liaison.
Northwestern professors Aida Giachello and Dr. Martha Daviglus plan to help with outreach and to use the data collected from the registry. The two recently submitted a National Institutes of Health grant application for $950,000 over five years to establish something that would be called the Center of Health Disparities for Cardiovascular Health. They are seeking funds for research, research training and community engagement.
"In poor communities, people don't understand what research is. There is distrust," said Giachello, former director of the Midwest Latino Health, Research, Training and Policy Center at the University of Illinois at Chicago. "If we receive funding, we can do a comprehensive community campaign, outreach and a media effort to get the word out about research, clinical studies and the importance of studies to improve their own health."
Giachello and Daviglus are working on a six-year study of Hispanic health by targeting 16,000 participants in Chicago, Miami, New York and San Diego. They have a $65 million National Institutes of Health grant funding the research.
The lack of data on Hispanic health is more apparent among recent immigrants and Hispanics with low income and low levels of education, Giachello said. In Illinois, advocates say they are fighting the perception that Hispanics are clustered in the Southeast, Northeast, Texas and California, and not the Midwest.
About 13 percent of the state's population — 1.7 million people — is Hispanic, according to U.S. census figures, constituting the 10th-highest Hispanic population in the nation.
"Latinos are all over the place, but that's something not a lot of policymakers are necessarily aware of," Giachello said. "That lack of awareness has led to a lack of funding to do research in Illinois. We need the data for better programs, services and public policy."
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