To wrap up National Minority Health Month, NCLR is proudly hosting a blog carnival with our friends and partners to celebrate recent progress toward eliminating health disparities for underserved communities—and talk frankly about the challenges that remain. Today, bloggers answer the question: What is your organization or community doing to advance a health equity mission?
Our Communities Count: Advancing Health Equity by Improving Data
By, Rebecca Spence, Reproductive Justice Fellow, Asian & Pacific Islander American Health Forum
For the Asian & Pacific Islander American Health Forum, health equity means that every person and community has a fair chance to attain optimal health and well-being. To achieve health equity, APIAHF influences policy, mobilizes communities, and strengthens programs and organizations to improve the health of Asian Americans, Native Hawaiians, and Pacific Islanders (AAs and NHPIs).
In our 25 years as health justice advocates, we have learned this important lesson: you don’t count unless you are counted. Our communities suffer the consequences of limited data and research about the health and well-being of AA and NHPI communities through poorer health outcomes. Without appropriate data to inform how resources are allocated, many members of our communities are left out of health system planning, financing and programming. For decades, scientists, researchers and policymakers have treated Asian Americans, Native Hawaiians, and Pacific Islanders as one homogeneous group, leading to false conclusions about the incidence and impact of disease in our communities. In addition, the underlying social and economic factors that drive health care disparities cannot be understood without data about the context. Therefore, APIAHF advocates for specific action around data collection, reporting and analysis to better advocate for the needs of our communities, especially disaggregated data.
Disaggregated Data on Asian American, Native Hawaiian and Pacific Islander Communities.
Asian American, Native Hawaiian, and Pacific Islander communities trace their heritage to over 50 different countries and speak over 100 languages. Separating - or ‘disaggregating’- data between these subgroups would reveal major disparities in the health status and access to health care.
For example, doctors have long considered all Asian women to have a lower risk of breast cancer because, in the aggregate, Asian women are diagnosed at a significantly lower rate than women of other ethnicities. Disaggregated data, however, reveal that United States-born Chinese and Filipina women under the age of fifty-five have higher rates of breast cancer than white women. Advocate Susan Shinagawa tells her story of how the lack of data impacted her health:
I was denied a biopsy for a prominent and painful breast lump by a surgical oncologist who admonished me that, “Asian women don’t get breast cancer.” After seeking a second opinion and undergoing a surgical biopsy, I was eventually diagnosed with infiltrating breast cancer at the age of 34, and underwent a modified radical mastectomy, followed by combination chemotherapy. Ten years later, routine mammography revealed an unrelated breast cancer in my left breast, for which I underwent a second mastectomy. I have been advocating for better minority health data for the 20 years since my first breast cancer diagnosis. Yet, I continue to meet (primarily young) [Asian American, Native Hawaiian, and Pacific Islander] women diagnosed with breast cancer who were initially told by their health care providers that “Asian women don’t get breast cancer.
Enriching data to provide information particular to each group provides national and state policymakers and local leaders with the ability to set priorities and allocate resources to address racial and ethnic disparities in each community. Disaggregated data provides providers and patients with the information they need to make informed decisions about screening, prevention, care and treatment for disease.
Advocacy organizations like APIAHF cannot collect and analyze large sets of data that would reveal these disparities on our own. That’s why we support federal efforts under the Affordable Care Act and the Health Equity and Accountability Act to collect data, to link this data to quality and accessibility measures to ensure that Asian American, Native Hawaiian, and Pacific Islander communities and individuals are getting the care they need.