Custom Data Collection System to Improve Health Disparity Research

An innovative web-based data collection platform used in public health research with multilingual older Chinese Americans and their family caregivers is the focus of a new article published in the Journal of the American Geriatrics Society.

Researchers at Rutgers developed the platform, which has been in use since 2011 for the PINE Study, or the Population Study of Chinese Elderly, a longitudinal cohort study of more than 3,000 Chinese Americans aged 60 years and older living in the Greater Chicago area.

“Using the innovative data collection system, we were able to collect community- and individual-level health data of Chinese older adults with culturally and linguistically appropriate measures,” says XinQi Dong, director of Rutgers University's Institute for Health, Health Care Policy and Aging Research and the lead researcher of the PINE Study.

To the best of his knowledge, it is the first and largest epidemiological cohort study of Chinese older adults in the U.S. The study used survey research methods. Trained multilingual and bicultural research assistants conducted in-person interviews via wireless devices in the participants’ preferred language or Chinese dialect.

The application then transmitted the data through a wireless service to a secure server in real-time. Once data were entered into the database, multiple features were enabled to optimize monitoring, data security, and streamlined data set preparation for analysis purposes. Additional enhanced security measures ensured data safety and security of the participant’s information.

According to Dong, the application allows research staff to actively engage with the participants during the survey process to develop rapport and ensure comprehension.

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"This innovative platform addresses multiple challenges related to collecting data in minority and vulnerable populations," Dong says. "With advantages such as real-time data quality monitoring and programmed automatic data validation, multilingual interface, streamlined data set preparation, and automatic built-in skip patterns to reduce interviewer errors, this application has the potential to revolutionize survey research and ultimately improve the health and well-being of many diverse populations."

Despite the reported growth of this population nationwide, the lack of representative population-based data pertaining to the health of Chinese older adults significantly impedes the understanding of health disparities and their impact on the individuals, families, communities, and healthcare systems.

Chinese culture has a preference for family caregiving in the home by adult children. Medical decisions and service use of older Chinese Americans is largely influenced by these family caregivers. Various studies indicate this cultural preference has significant physical and psychological consequences, such as elder abuse and mental distress.

Research also shows that older Chinese Americans are vulnerable to certain conditions, such as depression and loneliness. Cardiovascular, musculoskeletal, and pulmonary symptoms are also highly prevalent.

In addressing concerns of this population, Dong recommends that the healthcare industry:

• First, increase outreach and education of preventive health services and connect older Chinese Americans and their family caregivers with resources to help them navigate the U.S. healthcare system;

• Second, educate older Chinese Americans and their caregivers about under-recognized medical conditions that affect them; and

• Third, recognize that ethnic-specific data is fundamental to understanding the sociocultural determinants of health in diverse aging populations. 

Findings from the PINE Study indicate that older Chinese Americans experience a wide array of linguistic, cultural, social, and structural barriers in addressing their health care needs. Dong suggests that affordable insurance, improved transportation services, and cultural sensitivity training for healthcare workers can help more Chinese older adults receive adequate health services.