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JNCI Monographs 2005 2005(35):12-25; doi:10.1093/jncimonographs/lgi033
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© The Author 2005. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oxfordjournals.org.

Building a Virtual Cancer Research Organization

Mark C. Hornbrook, Gene Hart, Jennifer L. Ellis, Donald J. Bachman, Gary Ansell, Sarah M. Greene, Edward H. Wagner, Roy Pardee, Mark M. Schmidt, Ann Geiger, Amy L. Butani, Terry Field, Hassan Fouayzi, Irina Miroshnik, Liyan Liu, Robert Diseker, Karen Wells, Rick Krajenta, Lois Lamerato, Christine Neslund Dudas

Affiliations of authors: Center for Health Research, Northwest/Hawaii, Kaiser Permanente Northwest, Portland, OR (MCH, DJB, GA); Center for Health Studies, Group Health Cooperative, Seattle, WA (GH, SMG, EHW, RP); Clinical Research Unit, Kaiser Permanente Colorado, Denver, CO (JLE); Center for Health Research, Kaiser Permanente Hawaii, Honolulu, HI (MMS); Office of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, CA (AG); HealthPartners Research Foundation, Minneapolis, MN (ALB); Meyers Primary Care Trust/Fallon Health Systems, Worcester, MA (TF, HF); Harvard Pilgrim Health Care, Boston, MA (IM); Division of Research, Kaiser Permanente Northern California, Oakland, CA (L. Liu); Department of Prevention and Research, Kaiser Permanente Georgia, Atlanta, GA (RD); Center for Health Services Research, Henry Ford Health System, Detroit, MI (KW, RK, L. Lamerato, CND)

Correspondence to: Mark C. Hornbrook, PhD, Center for Health Research, 3800 N. Interstate Ave., Portland, OR 97227 (e-mail: mark.c.hornbrook{at}kpch.org).

Background: The Cancer Research Network (CRN) comprises the National Cancer Institute and 11 nonprofit research centers affiliated with integrated health care delivery systems. The CRN, a public/private partnership, fosters multisite collaborative research on cancer prevention, screening, treatment, survival, and palliation in diverse populations. Methods: The CRN's success hinges on producing innovative cancer research that likely would not have been developed by scientists working individually, and then translating those findings into clinical practice within multiple population laboratories. The CRN is a collaborative virtual research organization characterized by user-defined sharing among scientists and health care providers of data files as well as direct access to researchers, computers, software, data, research participants, and other resources. The CRN's research management Web site fosters a high-functioning virtual scientific community by publishing standardized data definitions, file specifications, and computer programs to support merging and analyzing data from multiple health care systems. Results: Seven major types of standardized data files developed to date include demographics, health plan eligibility, tumor registry, inpatient and ambulatory utilization, medication dispensing, laboratory tests, and imaging procedures; more will follow. Data standardization avoids rework, increases multisite data integrity, increases data security, generates shorter times from initial proposal concept to submission, and stimulates more frequent collaborations among scientists across multiple institutions. Conclusions: The CRN research management Web site and associated standardized data files and procedures represent a quasi-public resource, and the CRN stands ready to collaborate with researchers from outside institutions in developing and conducting innovative public domain research.


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