Journal article
Electronic health records based phenotyping in next-generation clinical trials: a perspective from the NIH Health Care Systems Collaboratory
Journal of the American Medical Informatics Association : JAMIA, Vol.20(e2), pp.e226-e231
12/2013
DOI: 10.1136/amiajnl-2013-001926
PMCID: PMC3861929
PMID: 23956018
Abstract
Widespread sharing of data from electronic health records and patient-reported outcomes can strengthen the national capacity for conducting cost-effective clinical trials and allow research to be embedded within routine care delivery. While pragmatic clinical trials (PCTs) have been performed for decades, they now can draw on rich sources of clinical and operational data that are continuously fed back to inform research and practice. The Health Care Systems Collaboratory program, initiated by the NIH Common Fund in 2012, engages healthcare systems as partners in discussing and promoting activities, tools, and strategies for supporting active participation in PCTs. The NIH Collaboratory consists of seven demonstration projects, and seven problem-specific working group 'Cores', aimed at leveraging the data captured in heterogeneous 'real-world' environments for research, thereby improving the efficiency, relevance, and generalizability of trials. Here, we introduce the Collaboratory, focusing on its Phenotype, Data Standards, and Data Quality Core, and present early observations from researchers implementing PCTs within large healthcare systems. We also identify gaps in knowledge and present an informatics research agenda that includes identifying methods for the definition and appropriate application of phenotypes in diverse healthcare settings, and methods for validating both the definition and execution of electronic health records based phenotypes.
Details
- Title: Subtitle
- Electronic health records based phenotyping in next-generation clinical trials: a perspective from the NIH Health Care Systems Collaboratory
- Creators
- Rachel L Richesson - Department of Informatics, Duke University School of Nursing, Durham, North Carolina, USAW Ed HammondMeredith NahmDouglas WixtedGregory E SimonJennifer G RobinsonAlan E BauckDenise CifelliMichelle M SmerekJohn DickersonReesa L LawsRosemary A MadiganShelley A RusincovitchCynthia KlucharRobert M Califf
- Resource Type
- Journal article
- Publication Details
- Journal of the American Medical Informatics Association : JAMIA, Vol.20(e2), pp.e226-e231
- Publisher
- England
- DOI
- 10.1136/amiajnl-2013-001926
- PMID
- 23956018
- PMCID
- PMC3861929
- ISSN
- 1527-974X
- eISSN
- 1527-974X
- Grant note
- 1UH2 AT007784-01 / NCCIH NIH HHS U54 AT007748 / NCCIH NIH HHS 1UH2AT007766-01 / NCCIH NIH HHS UH2 AT007797 / NCCIH NIH HHS UH2 AT007769 / NCCIH NIH HHS 1UH2AT007769-01 / NCCIH NIH HHS UH2 AT007784 / NCCIH NIH HHS 1UH2AT007755-01 / NCCIH NIH HHS 1U54AT007748-01 / NCCIH NIH HHS UH2 AT007766 / NCCIH NIH HHS UH2 AT007755 / NCCIH NIH HHS 1UH2AT007782-01 / NCCIH NIH HHS UH2 AT007782 / NCCIH NIH HHS UH2 AT007788 / NCCIH NIH HHS 1UH2AT007797-01 / NCCIH NIH HHS 1UH2AT007788-01 / NCCIH NIH HHS
- Language
- English
- Date published
- 12/2013
- Academic Unit
- Epidemiology; Internal Medicine
- Record Identifier
- 9983996086002771
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