A Comparison of Single-Network and Multi-Site Approaches to Real-World Data Collection
Author(s)
Kristen Hahn, PhD, MPH1, Emily Cibelli, PhD2;
1PicnicHealth, Head of RWE Research, San Francisco, CA, USA, 2PicnicHealth, San Francisco, CA, USA
1PicnicHealth, Head of RWE Research, San Francisco, CA, USA, 2PicnicHealth, San Francisco, CA, USA
Presentation Documents
OBJECTIVES: To assess and compare the duration and completeness of health journeys of multiple sclerosis (MS) patients within a single network of care, which mimics a traditional site-based study, with a curated dataset from all facilities where patients had received care, the PicnicHealth approach.
METHODS: Using PicnicHealth’s MS patient registry we simulated a dataset that would be available if patient information was restricted to one of five care networks across the U.S. (the single-network or “SN” dataset), and compared with what was observed for the same patients from all facilities where they had received care as captured by PicnicHealth (the “PH” dataset). To be eligible for analyses, patients must have had at least 10% of their inpatient/outpatient visits and at least one visit post-MS diagnosis in one of the systems of interest, to ensure that the SN dataset would “know” about their diagnosis. Patients were further restricted to those who have visits in only one of the target systems of interest.
RESULTS: 370 qualifying MS patients residing in 37 U.S. states were identified. Compared with the SN dataset, the median patient in the PH dataset had more years of visits (SN: 4, PH: 9), neurology encounters (SN: 4, PH: 13), providers (SN: 6, PH: 15), hospitalizations (SN: 1, PH: 2), and hospital days (SN: 1, PH: 4).Using the PH dataset as a “gold standard”, the SN dataset would have observed only 47% of MS relapses, 81% of newly-initiated MS treatments, 70% of Expanded Disability Status Scale (EDSS) measurements, and 60% of neurology magnetic resonance imaging.
CONCLUSIONS: Our analyses demonstrate that missing information is more likely in traditional site-based methods or analyses limited to single networks than in the PicnicHealth methodology. This can lead to misclassification and selection bias, which may result in biased insights.
METHODS: Using PicnicHealth’s MS patient registry we simulated a dataset that would be available if patient information was restricted to one of five care networks across the U.S. (the single-network or “SN” dataset), and compared with what was observed for the same patients from all facilities where they had received care as captured by PicnicHealth (the “PH” dataset). To be eligible for analyses, patients must have had at least 10% of their inpatient/outpatient visits and at least one visit post-MS diagnosis in one of the systems of interest, to ensure that the SN dataset would “know” about their diagnosis. Patients were further restricted to those who have visits in only one of the target systems of interest.
RESULTS: 370 qualifying MS patients residing in 37 U.S. states were identified. Compared with the SN dataset, the median patient in the PH dataset had more years of visits (SN: 4, PH: 9), neurology encounters (SN: 4, PH: 13), providers (SN: 6, PH: 15), hospitalizations (SN: 1, PH: 2), and hospital days (SN: 1, PH: 4).Using the PH dataset as a “gold standard”, the SN dataset would have observed only 47% of MS relapses, 81% of newly-initiated MS treatments, 70% of Expanded Disability Status Scale (EDSS) measurements, and 60% of neurology magnetic resonance imaging.
CONCLUSIONS: Our analyses demonstrate that missing information is more likely in traditional site-based methods or analyses limited to single networks than in the PicnicHealth methodology. This can lead to misclassification and selection bias, which may result in biased insights.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
SA8
Topic
Study Approaches
Disease
No Additional Disease & Conditions/Specialized Treatment Areas