Are Publicly Funded Health Databases Geographically Detailed and Timely Enough to Support Patient-Centered Outcomes Research?
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Emerging health care research paradigms such as comparative effectiveness research (CER), patient-centered outcome research (PCOR), and precision medicine (PM) share one ultimate goal: constructing evidence to provide the right treatment to the right patient at the right time. We argue that to succeed at this goal, it is crucial to have both timely access to individual-level data and fine geographic granularity in the data. Existing data will continue to be an important resource for observational studies as new data sources are developed. We examined widely used publicly funded health databases and population-based survey systems and found four ways they could be improved to better support the new research paradigms: (1) finer and more consistent geographic granularity, (2) more complete geographic coverage of the US population, (3) shorter time from data collection to data release, and (4) improved environments for restricted data access. We believe that existing data sources, if utilized optimally, and newly developed data infrastructures will both play a key role in expanding our insight into what treatments, at what time, work for each patient.
KEY WORDSPCOR CER PM health database data utility
The authors wish to thank Daniel A. Waxman, MD, PhD, for his helpful review and comments on the manuscript.
This study was funded by contract HHSM-500-2014-00036I (PD Concannon), titled “Evaluation of From Coverage to Care (C2C),” from the Centers for Medicare and Medicaid Services (CMS). The content of this manuscript does not necessarily reflect the views or policies of CMS. The agency had no role in the collection, analysis and interpretation of the findings, or approval of the finished manuscript.
Compliance with Ethical Standards
Conflicts of Interest
The authors declare that they have no conflict of interest.
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