Diabetes and asthma case identification, validation, and representativeness when using electronic health data to construct registries for comparative effectiveness and epidemiologic research.
BACKGROUND
Advances in health information technology and widespread use of electronic health data offer new opportunities for development of large scale multisite disease-specific patient registries. Such registries use existing data, can be constructed at relatively low cost, include large numbers of patients, and once created can be used to address many issues with a short time between posing a question and obtaining an answer. Potential applications include comparative effectiveness research, public health surveillance, mapping and improving quality of clinical care, and others.
This paper describes selected conceptual and practical challenges related to development of multisite diabetes and asthma registries, including development of case definitions, validation of case identification methods, variation in electronic health data sources; representativeness of registry populations, including the impact of attrition. Specific challenges are illustrated with data from actual registries.
HealthPartners Research Foundation, Minneapolis, MN 55425, USA. jay.r.desai@healthpartners.com
Jay R
JR
Desai
Pingsheng
P
Wu
Greg A
GA
Nichols
Tracy A
TA
Lieu
Patrick J
PJ
O'Connor
D001249:Asthma / Q000453:epidemiology; D057186:Comparative Effectiveness Research; D003920:Diabetes Mellitus / Q000453:epidemiology; D006801:Humans; D008498:Medical Record Linkage; D016347:Medical Records Systems, Computerized / Q000458:organization & administration*; D012042:Registries; D014481:United States; D054928:Validation Studies as Topic