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Electronic health records based phenotyping in next-generation clinical trials: a perspective from the NIH Health Care Systems Collaboratory.

Publication ,  Journal Article
Richesson, RL; Hammond, WE; Nahm, M; Wixted, D; Simon, GE; Robinson, JG; Bauck, AE; Cifelli, D; Smerek, MM; Dickerson, J; Laws, RL; Kluchar, C ...
Published in: J Am Med Inform Assoc
December 2013

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.

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Published In

J Am Med Inform Assoc

DOI

EISSN

1527-974X

Publication Date

December 2013

Volume

20

Issue

e2

Start / End Page

e226 / e231

Location

England

Related Subject Headings

  • United States
  • Pragmatic Clinical Trials as Topic
  • Phenotype
  • National Institutes of Health (U.S.)
  • Medical Informatics
  • Humans
  • Electronic Health Records
  • 46 Information and computing sciences
  • 42 Health sciences
  • 32 Biomedical and clinical sciences
 

Citation

APA
Chicago
ICMJE
MLA
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Richesson, R. L., Hammond, W. E., Nahm, M., Wixted, D., Simon, G. E., Robinson, J. G., … Califf, R. M. (2013). Electronic health records based phenotyping in next-generation clinical trials: a perspective from the NIH Health Care Systems Collaboratory. J Am Med Inform Assoc, 20(e2), e226–e231. https://doi.org/10.1136/amiajnl-2013-001926
Richesson, Rachel L., W Ed Hammond, Meredith Nahm, Douglas Wixted, Gregory E. Simon, Jennifer G. Robinson, Alan E. Bauck, et al. “Electronic health records based phenotyping in next-generation clinical trials: a perspective from the NIH Health Care Systems Collaboratory.J Am Med Inform Assoc 20, no. e2 (December 2013): e226–31. https://doi.org/10.1136/amiajnl-2013-001926.
Richesson RL, Hammond WE, Nahm M, Wixted D, Simon GE, Robinson JG, et al. Electronic health records based phenotyping in next-generation clinical trials: a perspective from the NIH Health Care Systems Collaboratory. J Am Med Inform Assoc. 2013 Dec;20(e2):e226–31.
Richesson, Rachel L., et al. “Electronic health records based phenotyping in next-generation clinical trials: a perspective from the NIH Health Care Systems Collaboratory.J Am Med Inform Assoc, vol. 20, no. e2, Dec. 2013, pp. e226–31. Pubmed, doi:10.1136/amiajnl-2013-001926.
Richesson RL, Hammond WE, Nahm M, Wixted D, Simon GE, Robinson JG, Bauck AE, Cifelli D, Smerek MM, Dickerson J, Laws RL, Madigan RA, Rusincovitch SA, Kluchar C, Califf RM. Electronic health records based phenotyping in next-generation clinical trials: a perspective from the NIH Health Care Systems Collaboratory. J Am Med Inform Assoc. 2013 Dec;20(e2):e226–e231.
Journal cover image

Published In

J Am Med Inform Assoc

DOI

EISSN

1527-974X

Publication Date

December 2013

Volume

20

Issue

e2

Start / End Page

e226 / e231

Location

England

Related Subject Headings

  • United States
  • Pragmatic Clinical Trials as Topic
  • Phenotype
  • National Institutes of Health (U.S.)
  • Medical Informatics
  • Humans
  • Electronic Health Records
  • 46 Information and computing sciences
  • 42 Health sciences
  • 32 Biomedical and clinical sciences