REAL-WORLD DATA IN DEMENTIA RESEARCH: IMPLICATIONS FOR HEALTH ECONOMICS AND OUTCOMES RESEARCH
Author(s)
Ashley Kuzmik, DrPH, MPH1, Lycia Tramujas Vasconcellos Neumann, PhD, MPA2;
1Alzheimer's Association, Chicago, IL, USA, 2Alzheimer’s Association, Chicago, IL, USA
1Alzheimer's Association, Chicago, IL, USA, 2Alzheimer’s Association, Chicago, IL, USA
OBJECTIVES: To assess whether real-world data (RWD) studies in the United States on Alzheimer’s disease and related dementias (AD/ADRD) include the clinical, social-context, and equity-relevant information needed to support robust health economics and outcomes research (HEOR). Key features examined included RWD sources, dataset linkage, and reported metric domains.
METHODS: As part of a larger scoping review, United States-based AD/ADRD studies using real-world data (2020-2025) were identified through a structured search of PubMed, Embase, CINAHL, Web of Science, and EconLit. From 104 eligible studies, HEOR-relevant characteristics were captured, including RWD source, study design, linked datasets, and the types of economic, clinical, and access-related metrics reported.
RESULTS: Claims were the predominant RWD source (72%), followed by Centers for Medicare & Medicaid Services datasets (31%). Electronic health records were used in 16% of studies, with only eight incorporating unstructured clinical notes; registry use was minimal (1%). Nearly two-thirds of studies (n=65) used linked datasets. Retrospective cohort designs were most prevalent (76%). Healthcare utilization metrics were most frequently reported (107 instances), whereas cost (20), quality (23), access (12), and equity or disparities measures (16 studies) were less common. Functional measures, caregiver-reported data, social determinants of health indicators, and applications of machine learning or artificial intelligence were rarely included.
CONCLUSIONS: Current dementia studies using RWD rely heavily on claims-based sources and offer limited measurement across quality, cost, access, and equity domains. These gaps constrain HEOR analyses that require richer clinical, economic, and social-context information. Strengthening RWD infrastructure, including the integration of clinical data, social data, and patient registries, and broadening the range of reported metrics will be essential for supporting value assessment, reimbursement decisions, and policy planning by payers, health systems, and policymakers.
METHODS: As part of a larger scoping review, United States-based AD/ADRD studies using real-world data (2020-2025) were identified through a structured search of PubMed, Embase, CINAHL, Web of Science, and EconLit. From 104 eligible studies, HEOR-relevant characteristics were captured, including RWD source, study design, linked datasets, and the types of economic, clinical, and access-related metrics reported.
RESULTS: Claims were the predominant RWD source (72%), followed by Centers for Medicare & Medicaid Services datasets (31%). Electronic health records were used in 16% of studies, with only eight incorporating unstructured clinical notes; registry use was minimal (1%). Nearly two-thirds of studies (n=65) used linked datasets. Retrospective cohort designs were most prevalent (76%). Healthcare utilization metrics were most frequently reported (107 instances), whereas cost (20), quality (23), access (12), and equity or disparities measures (16 studies) were less common. Functional measures, caregiver-reported data, social determinants of health indicators, and applications of machine learning or artificial intelligence were rarely included.
CONCLUSIONS: Current dementia studies using RWD rely heavily on claims-based sources and offer limited measurement across quality, cost, access, and equity domains. These gaps constrain HEOR analyses that require richer clinical, economic, and social-context information. Strengthening RWD infrastructure, including the integration of clinical data, social data, and patient registries, and broadening the range of reported metrics will be essential for supporting value assessment, reimbursement decisions, and policy planning by payers, health systems, and policymakers.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
RWD107
Topic
Real World Data & Information Systems
Topic Subcategory
Health & Insurance Records Systems
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, SDC: Geriatrics