Weill Cornell Medicine has received a two-year, $1.4 million grant from the National Institute on Aging (NIA) to develop a national data infrastructure that will support efforts to better understand the health consequences of elder mistreatment and guide approaches to protect vulnerable older adults.
Each year, as many as 7 million adults in the United States aged 60 and older face mistreatment, including abuse, neglect or exploitation. Millions more experience self-neglect, when individuals can't take care of their basic needs.
Though these conditions are associated with significantly adverse health outcomes and increased risk of death, elder mistreatment is an underrecognized public health problem. As our population ages, more older adults are likely to be affected, yet we still know far too little about how to identify mistreatment early and intervene effectively"
Dr. Tony Rosen, principal investigator, associate professor of emergency medicine and associate vice chair of research, Department of Emergency Medicine, Weill Cornell Medicine
To address this critical gap, the research team will develop ACLink, a privacy-preserving research infrastructure that links records from state Adult Protective Services (APS) agencies with administrative Medicare and Medicaid claims data.
APS agencies are responsible for investigating and responding to calls about older or vulnerable adults who are neglected or mistreated. Nationwide, they receive more than 1.5 million reports each year and identify approximately 280,000 adults who need help.
"With ACLink, we'll be able to examine how older adults experiencing mistreatment interact with the healthcare system before and after they come to the attention of Adult Protective Services, including their healthcare trajectories," said Dr. Rosen, who is also an emergency medicine physician at NewYork-Presbyterian/Weill Cornell Medical Center. "This could help us identify missed opportunities to recognize mistreatment and intervene earlier."
Overcoming challenges to connecting data
"APS data provide critical information on elder mistreatment and self-neglect but lack comprehensive longer-term healthcare information," said Dr. Yongkang Zhang, associate professor of population health sciences at Weill Cornell, who is co-leading the Data Linkage and Analytic Dataset Access mini-core with Dr. Laura Keohane, associate professor at Vanderbilt University Medical Center. "Conversely, Medicare and Medicaid claims capture healthcare utilization, outcomes and spending but cannot reliably identify elder mistreatment."
Although researchers have conducted small-scale linkages, broader efforts have been limited by fragmented APS data systems, privacy restrictions, and complex data-sharing and linkage requirements, Dr. Zhang said. Another challenge involves designing a model that harmonizes the existing data systems, since each state tracks and reports data differently.
ACLink aims to overcome these barriers by establishing a standardized, multistate research infrastructure while safeguarding sensitive personal information. The project will initially incorporate APS data from Texas, which has already committed to participating. The National Adult Protective Services Association and other stakeholders will help recruit additional states.
This collaborative effort brings together Weill Cornell's Department of Emergency Medicine and Department of Population Health Sciences. The emergency department contributes clinical knowledge of elder mistreatment and self-neglect, established APS partnerships and insights into meaningful research questions. Population health sciences brings experience in Medicare and Medicaid data, data linkage, epidemiology and advanced quantitative methods.
"Together, these complementary strengths ensure that ACLink is both clinically relevant and methodologically rigorous, transforming complex linked data into actionable evidence to improve the identification, prevention, and management of elder mistreatment and self-neglect," said Dr. Zhang.
Encouraging broader research
The team will first establish ACLink's governance structure and develop a standardized data model to integrate information from participating states with Medicare and Medicaid claims. Then they will validate the data-linkage process, characterize the resulting research population and examine healthcare utilization patterns among older adults experiencing mistreatment and self-neglect.
The linked APS-Medicare data will be housed within NIA LINKAGE, a secure research platform, and will not be publicly available. Qualified researchers will be able to request access subject to appropriate approvals and data-use agreements.
The team will also support external investigators through pilot grants, encouraging broader participation in this understudied area. A public-facing ACLink website will provide project updates and information about research, training and opportunities for collaboration.
Ultimately, this work could help reduce avoidable suffering, illness and premature death among older adults.
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