TY - JOUR
T1 - The Cancer Research Network
T2 - a platform for epidemiologic and health services research on cancer prevention, care, and outcomes in large, stable populations
AU - Chubak, Jessica
AU - Ziebell, Rebecca
AU - Greenlee, Robert T.
AU - Honda, Stacey
AU - Hornbrook, Mark C.
AU - Epstein, Mara
AU - Nekhlyudov, Larissa
AU - Pawloski, Pamala A.
AU - Ritzwoller, Debra P.
AU - Ghai, Nirupa R.
AU - Feigelson, Heather Spencer
AU - Clancy, Heather A.
AU - Doria-Rose, V. Paul
AU - Kushi, Lawrence H.
PY - 2016/9/17
Y1 - 2016/9/17
N2 - Purpose: 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. Methods: 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. Results: 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. Conclusions: 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.
AB - Purpose: 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. Methods: 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. Results: 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. Conclusions: 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.
KW - Cancer
KW - Epidemiology
KW - Health services
KW - Integrated health care delivery systems
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UR - http://www.scopus.com/inward/citedby.url?scp=84988443461&partnerID=8YFLogxK
U2 - 10.1007/s10552-016-0808-4
DO - 10.1007/s10552-016-0808-4
M3 - Article
C2 - 27639398
AN - SCOPUS:84988443461
SP - 1
EP - 9
JO - Cancer Causes and Control
JF - Cancer Causes and Control
SN - 0957-5243
ER -