#1559 Using nephrology clinic data to emulate cohorts: a comparison between an electronic health records service and Chronic Renal Insufficiency Cohort
Authors: Saghafi Hossein , Saghafi Alireza 
Published: May 2024

Background and Aims

The amount of data contributed to evidence-synthesis is inequitably distributed among various countries in a way that most of the data is emerged from developed and/or upper middle and high income countries. One efficient and low-cost solution can be the implementation of scattered electronic health records (EHR) sources in those countries into emulated cohort studies. We aim to compare the characteristics of a custom-built nephrology clinic electronic health records (CBNC-EHR) service that is in practice for more than 13 years with Chronic Renal Insufficiency Cohort (CRIC) study which has approximately the same span and enrollment to find out about the feasibility, strengths, and challenges of the proposition.

Method

We compared measured variables of baseline characteristics and follow-up strategy of CRIC study with the data provided by CBNC-EHR to estimate if the care-centered database is capable of emulating a cohort study.

Results

Among variables of socioeconomic information at CRIC study, CBNC-EHR provides 33% at full, 33% are “partially available or easily accessible” (PAEA), and 33% are not available. 71% of variables of medical history are fully available for all patients, while only 14% are PAEA, and 14% are not available. For kidney function measures, CBNC-EHR provides 55% of variables completely, while the remaining 45% are PAEA. Obviously, no blood or urine sample were collected during ambulatory care, and no questionnaire on different aspects of health were used to gather supplementary data, contrary to CRIC study. Compared to follow-up strategy of CRIC study, which indicated Annual visits and laboratory tests and 6-month telephone follow-ups, CBNC-EHR yields data only upon personally-decided attention of patients for follow-up care, which varies widely from one patient to another. Nevertheless, the majority of patients have at least one office visit in a year, accompanied by relevant laboratory tests. CBNC-EHR provides a complete list of risk factors and comorbidities of each patient, which makes it suitable for subgrouping, as was designed in CRIC study regard the diabetes status of patients. CBNC-EHR currently has data of 6481 individuals with renal failure, compared to 3000 enrollment goal of CRIC study. However, much higher rates of dropout (estimated to be approximately 20%) and utilization of inclusion and exclusion criteria will contribute to the actual available cases to emulate a cohort study.

Conclusion

Implementing a care-centered database into emulation of a cohort study, is challenging and complicated. Lack of consistency, high dropout rates, imperfect baseline and complementary information, and need for extensive data cleaning are all difficulties. However, contribution to equitability of data share in evidence-synthesis, extremely lower cost of conduction, and less heterogeneity are strengths of this procedure which can have a remarkable effect on transforming medical data from less-developed countries (which understandably prioritize healthcare to research due to scarcity of resources) to effective research studies. In this paper, we compared a renowned nephrology cohort with a private nephrology clinic EHR in a developing country and showed virtual availability of data to emulate a cohort study based on the care-centered database.