Guest post by Lisa Lang, head of NLM’s National Information Center on Health Services Research and Health Care Technology
Singer-actress Selena Gomez shocked her fans this past September with the announcement that she had received a kidney transplant to combat organ damage caused by lupus.
Lupus, an autoimmune condition, strikes women much more than men, with minority women especially vulnerable. Not only is lupus two to three times more common in African American women than in Caucasian women, but recent studies funded by the CDC suggest that, like Ms. Gomez, Hispanic and non-Hispanic Asian women are more likely to have lupus-related kidney disease (lupus nephritis)—a potentially fatal complication.
Documenting such health disparities is crucial to understanding and addressing them. Significantly, the studies mentioned above are the first registries in the United States with sufficient Asians and Hispanics involved to measure the number of people diagnosed with lupus within these populations.
Investment in research examining potential solutions for health care disparities is essential.
In 2014, The Lancet featured a study that examined patterns, gaps, and directions of health disparity and equity research. Jointly conducted by the American Academy of Medical Colleges and AcademyHealth, a non-profit dedicated to enhancing and promoting health services research and a long-time NLM partner, the study examined changes in US investments in health equities and disparities research over time. Using abstracts in the NLM database HSRProj (Health Services Research Projects in Progress), the researchers found an overall shift in disparities-focused projects. From 2007 to 2011, health services research studies seeking to document specific disparities gave way to studies examining how best to alleviate such disparities. In fact, over half of the disparities-focused health services research funded in 2011 “aimed to reduce or eliminate a documented inequity.” The researchers also found significant differences in the attention given to particular conditions, groups, and outcomes. An update by AcademyHealth (publication forthcoming) found these differences continue in more recently funded HSR projects.
A more nuanced appreciation of affected groups is also critical to addressing health disparities. For example, the designation “Hispanic” is an over-simplification, an umbrella construct that obscures potentially important cultural, environmental, and even genetic differences we must acknowledge and appreciate if we are to maximize the benefits promised by personalized medicine. Reviews such as “Hispanic health in the USA: a scoping review of the literature” and “Controversies and evidence for cardiovascular disease in the diverse Hispanic population” highlight questions and conditions that would be informed by richer, more granular, data.
Lupus is one such condition. Research into this disease’s prevalence and impact among Hispanics is underway, but more attention may be warranted. There are almost 100 active clinical studies in the US targeting lupus currently listed in ClinicalTrials.gov and, of these, 15 address lupus nephritis. And while about 5% of ongoing or recently completed projects in the HSRProj database explicitly focus on Hispanic populations, only one, funded by the Patient-Centered Outcomes Research Institute, specifically addresses lupus. (You can see this study’s baseline measures and results on ClinicalTrials.gov.)
Perhaps a celebrity like Ms. Gomez publicly discussing her experience with lupus will spark more attention from both researchers and the public seeking to contribute to knowledge and cures.
After all, we are all both fundamentally unique and alike. Reducing—or better yet, eliminating—health disparities benefits us all.
Guest blogger Lisa Lang is Assistant Director for Health Services Research Information and also Head of NLM’s National Information Center on Health Services Research and Health Care Technology (NICHSR).