Unlocking the Potential of Secondary Data for Public Health Research: Retrospective Study With a Novel Clinical Platform

TY - JOUR

T1 - Unlocking the Potential of Secondary Data for Public Health Research: Retrospective Study With a Novel Clinical Platform

AU - Gundler, Christopher

AU - Gottfried, Karl

AU - Wiederhold, Alexander Johannes

AU - Ataian, Maximilian

AU - Wurlitzer, Marcus

AU - Gewehr, Jan Erik

AU - Ückert, Frank

N1 - ©Christopher Gundler, Karl Gottfried, Alexander Johannes Wiederhold, Maximilian Ataian, Marcus Wurlitzer, Jan Erik Gewehr, Frank Ückert. Originally published in the Interactive Journal of Medical Research (https://www.i-jmr.org/), 01.10.2024.

PY - 2024/10/1

Y1 - 2024/10/1

N2 - BACKGROUND: Clinical routine data derived from university hospitals hold immense value for health-related research on large cohorts. However, using secondary data for hypothesis testing necessitates adherence to scientific, legal (such as the General Data Protection Regulation, federal and state protection legislations), technical, and administrative requirements. This process is intricate, time-consuming, and susceptible to errors.OBJECTIVE: This study aims to develop a platform that enables clinicians to use current real-world data for testing research and evaluate advantages and limitations at a large university medical center (542,944 patients in 2022).METHODS: We identified requirements from clinical practitioners, conceptualized and implemented a platform based on the existing components, and assessed its applicability in clinical reality quantitatively and qualitatively.RESULTS: The proposed platform was established at the University Medical Center Hamburg-Eppendorf and made 639 forms encompassing 10,629 data elements accessible to all resident scientists and clinicians. Every day, the number of patients rises, and parts of their electronic health records are made accessible through the platform. Qualitatively, we were able to conduct a retrospective analysis of Parkinson disease over 777 patients, where we provide additional evidence for a significantly higher proportion of action tremors in patients with rest tremors (340/777, 43.8%) compared with those without rest tremors (255/777, 32.8%), as determined by a chi-square test (P<.001). Quantitatively, our findings demonstrate increased user engagement within the last 90 days, underscoring clinicians' increasing adoption of the platform in their regular research activities. Notably, the platform facilitated the retrieval of clinical data from 600,000 patients, emphasizing its substantial added value.CONCLUSIONS: This study demonstrates the feasibility of simplifying the use of clinical data to enhance exploration and sustainability in scientific research. The proposed platform emerges as a potential technological and legal framework for other medical centers, providing them with the means to unlock untapped potential within their routine data.

AB - BACKGROUND: Clinical routine data derived from university hospitals hold immense value for health-related research on large cohorts. However, using secondary data for hypothesis testing necessitates adherence to scientific, legal (such as the General Data Protection Regulation, federal and state protection legislations), technical, and administrative requirements. This process is intricate, time-consuming, and susceptible to errors.OBJECTIVE: This study aims to develop a platform that enables clinicians to use current real-world data for testing research and evaluate advantages and limitations at a large university medical center (542,944 patients in 2022).METHODS: We identified requirements from clinical practitioners, conceptualized and implemented a platform based on the existing components, and assessed its applicability in clinical reality quantitatively and qualitatively.RESULTS: The proposed platform was established at the University Medical Center Hamburg-Eppendorf and made 639 forms encompassing 10,629 data elements accessible to all resident scientists and clinicians. Every day, the number of patients rises, and parts of their electronic health records are made accessible through the platform. Qualitatively, we were able to conduct a retrospective analysis of Parkinson disease over 777 patients, where we provide additional evidence for a significantly higher proportion of action tremors in patients with rest tremors (340/777, 43.8%) compared with those without rest tremors (255/777, 32.8%), as determined by a chi-square test (P<.001). Quantitatively, our findings demonstrate increased user engagement within the last 90 days, underscoring clinicians' increasing adoption of the platform in their regular research activities. Notably, the platform facilitated the retrieval of clinical data from 600,000 patients, emphasizing its substantial added value.CONCLUSIONS: This study demonstrates the feasibility of simplifying the use of clinical data to enhance exploration and sustainability in scientific research. The proposed platform emerges as a potential technological and legal framework for other medical centers, providing them with the means to unlock untapped potential within their routine data.

U2 - 10.2196/51563

DO - 10.2196/51563

M3 - SCORING: Journal article

C2 - 39353185

VL - 13

SP - e51563

JO - INTERACT J MED RES

JF - INTERACT J MED RES

SN - 1929-073X

ER -