title: The Cancer Research Network: a platform for epidemiologic and health services research on cancer prevention, care, and outcomes in large, stable populations.
abstract: The ability to collect data on patients for long periods prior to, during, and after a cancer diagnosis is critical for studies of cancer etiology, prevention, treatment, outcomes, and costs. We describe such data capacities within the Cancer Research Network (CRN), a cooperative agreement between the National Cancer Institute (NCI) and organized health care systems across the United States.
  
  
  
  Data were extracted from each CRN site's virtual data warehouse using a centrally written and locally executed program. We computed the percent of patients continuously enrolled ≥1, ≥5, and ≥10 years before cancer diagnosis in 2012-2015 (year varied by CRN site). To describe retention after diagnosis, we computed the cumulative percentages enrolled, deceased, and disenrolled each year after the diagnosis for patients diagnosed in 2000.
  
  
  
  Approximately 8 million people were enrolled in ten CRN health plans on December 31, 2014 or 2015 (year varied by CRN site). Among more than 30,000 recent cancer diagnoses, 70 % were enrolled for ≥5 years and 56 % for ≥10 years before diagnosis. Among 25,274 cancers diagnosed in 2000, 28 % were still enrolled in 2010, 45 % had died, and 27 % had disenrolled from CRN health systems.
  
  
  
  Health plan enrollment before cancer diagnosis was generally long in the CRN, and the proportion of patients lost to follow-up after diagnosis was low. With long enrollment histories among cancer patients pre-diagnosis and low post-diagnosis disenrollment, the CRN provides an excellent platform for epidemiologic and health services research on cancer incidence, outcomes, and costs.
authors.affiliation: Group Health Research Institute, 1730 Minor Avenue, Suite 1600, Seattle, WA, 98101, USA. chubak.j@ghc.org.
authors.forename: Jessica
authors.initials: J
authors.lastname: Chubak
authors.affiliation: Group Health Research Institute, 1730 Minor Avenue, Suite 1600, Seattle, WA, 98101, USA.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Ziebell
authors.affiliation: Marshfield Clinic Research Foundation, Marshfield, WI, USA.
authors.forename: Robert T
authors.initials: RT
authors.lastname: Greenlee
authors.affiliation: Hawaii Permanente Group, Kaiser Permanente Hawaii, Honolulu, HI, USA.
authors.forename: Stacey
authors.initials: S
authors.lastname: Honda
authors.affiliation: Kaiser Permanente Center for Health Research, Portland, OR, USA.
authors.forename: Mark C
authors.initials: MC
authors.lastname: Hornbrook
authors.affiliation: Department of Medicine, Meyers Primary Care Institute, University of Massachusetts Medical School, Worcester, MA, USA.
authors.forename: Mara
authors.initials: M
authors.lastname: Epstein
authors.affiliation: Department of Population Medicine, Harvard Pilgrim Health Care Institute, Harvard Medical School, Boston, MA, USA.
authors.forename: Larissa
authors.initials: L
authors.lastname: Nekhlyudov
authors.affiliation: HealthPartners Institute, Minneapolis, MN, USA.
authors.forename: Pamala A
authors.initials: PA
authors.lastname: Pawloski
authors.affiliation: Kaiser Permanente Colorado, Institute for Health Research, Denver, CO, USA.
authors.forename: Debra P
authors.initials: DP
authors.lastname: Ritzwoller
authors.affiliation: Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, CA, USA.
authors.forename: Nirupa R
authors.initials: NR
authors.lastname: Ghai
authors.affiliation: Kaiser Permanente Colorado, Institute for Health Research, Denver, CO, USA.
authors.forename: Heather Spencer
authors.initials: HS
authors.lastname: Feigelson
authors.affiliation: Division of Research, Kaiser Permanente Northern California, Oakland, CA, USA.
authors.forename: Heather A
authors.initials: HA
authors.lastname: Clancy
authors.affiliation: Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA.
authors.forename: V Paul
authors.initials: VP
authors.lastname: Doria-Rose
authors.affiliation: Division of Research, Kaiser Permanente Northern California, Oakland, CA, USA.
authors.forename: Lawrence H
authors.initials: LH
authors.lastname: Kushi
mesh_terms: D003695:Delivery of Health Care; D006302:Health Services Research; D006801:Humans; D054547:National Cancer Institute (U.S.); D009369:Neoplasms / Q000453:epidemiology / Q000517:prevention & control* / Q000628:therapy*; D014481:United States
keywords: Cancer; Epidemiology; Health services; Integrated health care delivery systems