Abstract
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.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Lyman GH, Levine M (2012) Comparative effectiveness research in oncology: an overview. J Clin Oncol. doi:10.1200/JCO.2012.45.9792
Carpenter WR, Meyer A-M, Abernethy AP, Sturmer T, Kosorok MR (2012) A framework for understanding cancer comparative effectiveness research data needs. J Clin Epidemiol 65(11):1150–1158. doi:10.1016/j.jclinepi.2012.06.005
Abernethy AP, Etheredge LM, Ganz PA, Wallace P, German RR, Neti C, Bach PB, Murphy SB (2010) Rapid-learning system for cancer care. J Clin Oncol 28(27):4268–4274. doi:10.1200/jco.2010.28.5478
National Cancer Institute Introduction to PROSPR. U.S. Department of Health and Human Services. http://healthcaredelivery.cancer.gov/prospr/introduction.html. Accessed 20 Nov 2015
National Cancer Institute NCI Community Oncology Research Program (NCORP) Home Page. U.S. Department of Health and Human Services. http://ncorp.cancer.gov/about/. Accessed 20 Nov 2015
Wagner EH, Greene SM, Hart G, Field TS, Fletcher S, Geiger AM, Herrinton LJ, Hornbrook MC, Johnson CC, Mouchawar J, Rolnick SJ, Stevens VJ, Taplin SH, Tolsma D, Vogt TM (2005) Building a research consortium of large health systems: the Cancer Research Network. J Natl Cancer Inst Monogr 35:3–11. doi:10.1093/jncimonographs/lgi032
Hornbrook MC, Hart G, Ellis JL, Bachman DJ, Ansell G, Greene SM, Wagner EH, Pardee R, Schmidt MM, Geiger A, Butani AL, Field T, Fouayzi H, Miroshnik I, Liu L, Diseker R, Wells K, Krajenta R, Lamerato L, Neslund Dudas C (2005) Building a virtual cancer research organization. J Natl Cancer Inst Monogr 35:12–25. doi:10.1093/jncimonographs/lgi033
Nekhlyudov L, Greene SM, Chubak J, Rabin B, Tuzzio L, Rolnick S, Field TS (2013) Cancer Research Network: using integrated healthcare delivery systems as platforms for cancer survivorship research. J Cancer Surviv 7(1):55–62. doi:10.1007/s11764-012-0244-8
Geiger AM, Buist DS, Greene SM, Altschuler A, Field TS (2008) Survivorship research based in integrated healthcare delivery systems: the Cancer Research Network. Cancer 112(11 Suppl):2617–2626. doi:10.1002/cncr.23447
Selby JV, Friedman GD, Quesenberry CP Jr, Weiss NS (1992) A case-control study of screening sigmoidoscopy and mortality from colorectal cancer. N Engl J Med 326(10):653–657. doi:10.1056/NEJM199203053261001
Doubeni CA, Weinmann S, Adams K, Kamineni A, Buist DS, Ash AS, Rutter CM, Doria-Rose VP, Corley DA, Greenlee RT, Chubak J, Williams A, Kroll-Desrosiers AR, Johnson E, Webster J, Richert-Boe K, Levin TR, Fletcher RH, Weiss NS (2013) Screening colonoscopy and risk for incident late-stage colorectal cancer diagnosis in average-risk adults: a nested case-control study. Ann Intern Med 158(5 Pt 1):312–320. doi:10.7326/0003-4819-158-5-201303050-00003
Geiger AM, Thwin SS, Lash TL, Buist DS, Prout MN, Wei F, Field TS, Ulcickas Yood M, Frost FJ, Enger SM, Silliman RA (2007) Recurrences and second primary breast cancers in older women with initial early-stage disease. Cancer 109(5):966–974
Ritzwoller DP, Carroll NM, Delate T, Hornbrook MC, Kushi L, Bowles EJ, Loggers ET, Menter A (2014) Comparative effectiveness of adjunctive bevacizumab for advanced lung cancer: the cancer research network experience. J Thorac Oncol 9(5):692–701. doi:10.1097/JTO.0000000000000127
Loggers ET, Fishman PA, Peterson D, O’Keeffe-Rosetti M, Greenberg C, Hornbrook MC, Kushi LH, Lowry S, Ramaprasan A, Wagner EH, Weeks JC, Ritzwoller DP (2014) Advanced imaging among health maintenance organization enrollees with cancer. J Oncol Pract 10(4):231–238. doi:10.1200/JOP.2013.001258
Bowles EJA, Wellman R, Feigelson HS, Onitilo AA, Freedman AN, Delate T, Allen LA, Nekhlyudov L, Goddard KAB, Davis RL, Habel LA, Yood MU, Mccarty C, Magid DJ, Wagner EH, Pharmacovigilance Study Team (2012) Risk of heart failure in breast cancer patients after anthracycline and trastuzumab treatment: a retrospective cohort study. J Nat Cancer Inst 104(17):1293–1305. doi:10.1093/jnci/djs317
Prouty CD, Mazor KM, Greene SM, Roblin DW, Firneno CL, Lemay CA, Robinson BE, Gallagher TH (2014) Providers’ perceptions of communication breakdowns in cancer care. J Gen Intern Med 29(8):1122–1130. doi:10.1007/s11606-014-2769-1
Geiger AM, Castellino SM, Tooze JA, Altschuler A, Month S, Mertens AC, Nekhlyudov L, Greene SM (2013) Potential role of community-based healthcare system data in research on survivors of adolescent and young adult cancer. J Adolesc Young Adult Oncol 2(2):53–58. doi:10.1089/jayao.2012.0033
Ross TR, Ng D, Brown JS, Pardee R, Hornbrook MC (2014) The HMO Research Network Virtual Data Warehouse: A Public Data Model to Support Collaboration. EGEMS (Wash DC) 2 (1):Article 2. doi: 10.13063/2327-9214.1049
Surveillance Epidemiology and End Results (SEER) Program Site Recode ICD-O-3/WHO 2008 Definition. U.S. Department of Health and Human Services. http://seer.cancer.gov/siterecode/icdo3_dwhoheme/index.html. Accessed 5 Jan 2015
Field TS, Cernieux J, Buist D, Geiger A, Lamerato L, Hart G, Bachman D, Krajenta R, Greene S, Hornbrook MC, Ansell G, Herrinton L, Reed G (2004) Retention of enrollees following a cancer diagnosis within health maintenance organizations in the Cancer Research Network. J Natl Cancer Inst 96(2):148–152
Surveillance Epidemiology and End Results Table 1.5 Age-Adjusted SEER Incidence and U.S. Death Rates and 5-Year Relative Survival (Percent) By Primary Cancer Site, Sex and Time Period. National Cancer Institute. http://seer.cancer.gov/csr/1975_2012/results_merged/topic_survival.pdf. Accessed 10 July 2015
Boudreau DM, Yu O, Miglioretti DL, Buist DSM, Heckbert SR, Daling JR (2007) Statin use and breast cancer risk in a large population-based setting. Cancer Epidemiol Biomarkers Prev 16(3):416–421. doi:10.1158/1055-9965.epi-06-0737
Clough-Gorr KM, Thwin SS, Bosco JLF, Silliman RA, Buist DSM, Pawloski PA, Quinn VP, Prout MN (2012) Incident malignancies among older long-term breast cancer survivors and an age-matched and site-matched nonbreast cancer comparison group over 10 years of follow-up. Cancer 119(8):1478–1485. doi:10.1002/cncr.27914
Buist DS, Bosco JL, Silliman RA, Gold HT, Field T, Yood MU, Quinn VP, Prout M, Lash TL, Breast Cancer Outcomes in Older Women Investigators (2013) Long-term surveillance mammography and mortality in older women with a history of early stage invasive breast cancer. Breast Cancer Res Treat 142(1):153–163. doi:10.1007/s10549-013-2720-x
Acknowledgments
This study was funded by the National Cancer Institute at the National Institutes of Health (NIH), Award Number U24CA171524 to Lawrence H. Kushi, ScD. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. At Group Health, the collection of cancer incidence data used in this study was supported by the Cancer Surveillance System of the Fred Hutchinson Cancer Research Center, which is funded by Contract Nos. N01-CN-67009 and N01-PC-35142 from the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute, with additional support from the Fred Hutchinson Cancer Research Center and the State of Washington. At Marshfield Clinic Research Foundation, the project was also supported in part by the Clinical and Translational Science Award (CTSA) program, through the NIH National Center for Advancing Translational Sciences (NCATS), Grant No. UL1TR000427. The authors would like to thank Dr. Virginia Quinn for comments on previous versions of the manuscript.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors declare that they have no conflict of interest.
Ethical approval
For this type of study formal consent is not required.
Human and animal rights statement
This article does not contain any studies with animals performed by any of the authors.
Electronic supplementary material
Below is the link to the electronic supplementary material.
Rights and permissions
About this article
Cite this article
Chubak, J., Ziebell, R., Greenlee, R.T. et al. The Cancer Research Network: a platform for epidemiologic and health services research on cancer prevention, care, and outcomes in large, stable populations. Cancer Causes Control 27, 1315–1323 (2016). https://doi.org/10.1007/s10552-016-0808-4
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s10552-016-0808-4