Interactions between the health care and clini-
cal research communities are currently ineffi-
cient. The present environment forces unneces-
sary redundancy, from the capture of patient
data in the clinician-patient encounter to multi-
ple uses of that data. Clinical research opera-
tions must become more integrated with health
care processes to improve efficiencies in both
patient care and research. Achieving a single in-
stance of data capture to serve the combined
needs of both environments should facilitate
translation of knowledge from research into bet-
ter patient care. A critical first step in achieving
true interoperability is to develop formal data
standards that are then adopted by the larger
health care and research communities. The re-
wards of interoperability include streamlined
subject screening and enrollment procedures,
improved reporting, merging and subsequent
analysis of clinical data sets, and expansion of
knowledge made possible by leveraging research
data and results from other domains in the
health care community—all of which would in-
crease the quality of patient care. The aggrega-
tion of data across multiple sites and the subse-
quent reuse of that data do face challenges,
particularly in ensuring patient privacy; how-
ever, these can be overcome by technological in-
novation and consensus-building among stake-
holders.
393
INTRODUCTION
The need for a more efficient and effective ap-
proach to clinical research has been articulated
by numerous public (1,2) and private (3,4) or-
ganizations over the past several years. Enor-
mous amounts of private and public funds are
devoted to the organization of clinical trial
groups to test individual drugs, devices, and
treatment practices. However, once the research
is completed, the groups are disbanded, only to
be reconstituted at great expense when the next
new project appears on the scene. The creation
of a system that translates knowledge acquired
during research into clinical practice is thus an
important goal for the clinical research system.
One of the greatest inefficiencies of the current
model of clinical research in the United States is
its lack of a sustaining infrastructure that in-
cludes streamlined, one-time entry data collec-
tion, common data standards and terminology,
and cooperative use of data shared among re-
searchers (5).
More importantly, the findings of appropri-
ately conducted clinical research must be inte-
grated into patient care with more efficiency
and effectiveness. As stated by M. L. Milleson in
1997, “There is an unsettling, if little known,
truth about the practice of medicine. . . . Study
after study shows that few physicians systemati-
cally apply to everyday treatment the scientific
evidence about what works best” (6). Clinical re-
search provides the “evidence” in evidence-
based medicine; however, clinical trials are only
part of the cycle of therapeutic improvement
(Figure 1). This cycle highlights opportunities
to integrate quantitative strategies to improve
the quality of patient care and has been adapted
to focus on the underlying flow and interde-
pendency of data (7). The conduct of research
and the application of the knowledge gained
must be aligned with the diagnostic process,
treatment guidelines, and decision support
tools, not only to improve patient care but also
to lessen the burden that research places on
sites.
Patient care facilities conducting clinical re-
search are central to the interaction between
health care and research. Critical to the devel-
opment of research tools, workflow, and knowl-
Drug Information Journal, Vol. 41, pp. 393–404, 2007 • 0092-8615/2007
Printed in the USA. All rights reserved. Copyright © 2007 Drug Information Association, Inc.
Data Standards: At the Intersection of Sites,
Clinical Research Networks, and Standards
Development Initiatives
Brian McCourt, BA, CCDM
Duke Clinical Research
Institute, Durham,
North Carolina
Robert A. Harrington, MD
Duke Clinical Research
Institute, Durham,
North Carolina
Kathleen Fox, RN, BS
Duke Clinical Research
Institute, Durham,
North Carolina
Carol Dukes Hamilton, MD
Duke Clinical Research
Institute, Durham,
North Carolina
Kimberly Booher
Duke Clinical Research
Institute, Durham,
North Carolina
William E. Hammond, PhD
Duke School of Medicine,
Durham, North Carolina
Anita Walden
Duke Clinical Research
Institute, Durham, North
Carolina
Meredith Nahm, MS
Duke Clinical Research
Institute, Durham,
North Carolina
This project has been funded
in whole or in part with
federal funds from
the National
Institutes of Health,
under contract numbers
HHSN268200425212C and
HHSN268200425214C,
“Re-engineering the Clinical
Research Enterprise.”
Key Words
Functional interoperability;
Semantic interoperability;
Clinical data standards;
Data reporting;
Terminology;
Data elements
Correspondence Address
Brian McCourt,
Duke Clinical Research
Institute, 2400 Pratt Street,
Room 0311 Terrace Level,
Durham, NC 27705 (e-mail:
brian.mccourt@duke.edu).
CLINICAL RESEARCH STANDARDS