Skip Navigation LinksCancer-Surveillance-and-Data

Top Menu
Left Menu

Comprehensive cancer control program (CCCP)​

doctor holding patient hands
​​

Chapter 2: Cancer Survillience and Data 

Better Cancer Data, Better Health for All Californians

High-quality, inclusive cancer data are critical to reducing disparities and improving outcomes across all populations. Enhancing the California Cancer Registry (CCR) to include detailed information on race, ethnicity, language, gender identity, sexual orientation, disability status, and social determinants of health helps identify at-risk populations who are currently invisible in the cancer data continuum, and guide more effective interventions to reduce inequities. Special emphasis is placed on historically underrepresented groups, including Latinx, Indigenous, African American, Asian American, Native Hawaiian, and Pacific Islander (AANHPI) communities, as well as children and Lesbian Gay Bisexual Transgender Queer and more (LGBTQ+) populations.

Expanding demographic data collection improves completeness and relevance, helping identify service gaps and support equitable resource allocation. Bolstering the collection of Sexual Orientation, Gender Identity, and related data (SOGI+) ensures LGBTQ+ populations are accurately represented in research, clinical practice, and health policy.

To support an integrated public health infrastructure, efforts are underway to reduce data fragmentation by linking CCR data with complementary sources such as health surveys, vital records, and medical claims. These linkages enable a more nuanced understanding of how socioeconomic factors—such as income, education, and geography—influence cancer risk and access to care. Investments in data quality and usability include developing interactive dashboards and analytical tools that empower researchers, community organizations, and policymakers to translate data into actionable insights.

The goal is clear: build a modern, comprehensive cancer data system that reflects California's diversity and supports equitable access across the patient care continuum. Improving data quality and inclusive representation lays the foundation for smarter policies, targeted interventions, expanded research opportunities, and stronger outcomes—ensuring every community benefits from high-quality cancer care.

Previous Page: Chapter 1: Health Equity | Next Page: Chapter 3: Childhood Cancer​

​
​​

References:

  1. Allem, J. P., Van Valkenburgh, S. P., Donaldson, S. I., Dormanesh, A., Kelley, T. C., & Rosenthal, E. L. (2022). E-cigarette imagery in Netflix scripted television and movies popular among young adults: A content analysis. Addictive Behaviors Reports, 16, 100444. https://doi.org/10.1016/j.abrep.2022.100444
  2. Bhatt, J., & Bathija, P. (2018). Ensuring access to quality health care in vulnerable communities. Academic Medicine, 93(9), 1271–1275. https://doi.org/10.1097/acm.0000000000002254
  3. Bibbins-Domingo, K. (2019). Integrating social care into the delivery of health care. JAMA, 322(18), 1763–1764. https://doi.org/10.1001/jama.2019.15603
  4. Cahill, S., Singal, R., Grasso, C., King, D., Mayer, K., Baker, K., & Makadon, H. (2014). Do ask, do tell: High levels of acceptability by patients of routine collection of sexual orientation and gender identity data in four diverse American community health centers. PLOS ONE, 9(9), e107104. https://doi.org/10.1371/journal.pone.0107104
  5. Carroll, L. N., Au, A. P., Detwiller, L. T., Fu, T., Painter, I. S., & Abernethy, N. F. (2014). Visualization and analytics tools for infectious disease epidemiology: A systematic review. Journal of Biomedical Informatics, 51, 287–298. https://doi.org/10.1016/j.jbi.2014.04.006
  6. Cathcart-Rake, E. J., Jatoi, A., Dressler, E. V., Kittel, C., Weaver, K. E., Nightingale, C., Neuman, H., Loh, K. P., Kamen, C., Neuman, H. B., Nightingale, C. L., Parsons, S. K., Obeng-Gyasi, S., Cooley, M. E., Loh, K. P., Ramsey, S. D., McDonald, A. M., Foust, M., Braun-Inglis, C., & Kyono, W. T. (2024). Sexual orientation and gender identity data collection in cancer care: A nationwide landscape assessment update. JCO Oncology Practice, 20(9), 1272–1279. https://doi.org/10.1200/op.23.00724
  7. Conron, K. J. (2022). LGBT identification in U.S. and demographic characteristics. The Williams Institute, UCLA School of Law. https://williamsinstitute.law.ucla.edu
  8. Dixon, S. B., Chow, E. J., Hjorth, L., Hudson, M. M., Kremer, L. C. M., Morton, L. M., Nathan, P. C., Ness, K. K., Oeffinger, K. C., & Armstrong, G. T. (2020). The future of childhood cancer survivorship: Challenges and opportunities for continued progress. Pediatric Clinics of North America, 67(6), 1237–1251. https://doi.org/10.1016/j.pcl.2020.07.013
  9. Gottlieb, L., Tirozzi, K., Manchanda, R., Burns, A. R., & Sandel, M. (2016). Moving electronic medical records upstream: Incorporating social determinants of health. American Journal of Preventive Medicine, 48(2), 215–218. https://doi.org/10.1016/j.amepre.2014.07.009
  10. Gottlieb, L., Tirozzi, K., Manchanda, R., Burns, A. R., & Sandel, M. (2016). Moving electronic medical records upstream: Incorporating social determinants of health. American Journal of Preventive Medicine, 48(2), 215–218. https://doi.org/10.1016/j.amepre.2014.07.009
  11. Green, A. R., Tan-McGrory, A., Cervantes, M. C., & Betancourt, J. R. (2010). Leveraging quality improvement to achieve equity in health care. Joint Commission Journal on Quality and Patient Safety, 36(10), 435–442. https://doi.org/10.1016/s1553-7250(10)36065-x
  12. Haider, A. H., Schneider, E. B., Kodadek, L. M., Adler, R. R., Ranjit, A., Torain, M., Shields, R. Y., Snyder, C., Schuur, J. D., Vail, L., German, D., Peterson, S., & Lau, B. D. (2017). Emergency department query for patient-centered approaches to sexual orientation and gender identity. JAMA Internal Medicine, 177(6), 819–828. https://doi.org/10.1001/jamainternmed.2017.0906
  13. Kamen, C. S., Pratt-Chapman, M. L., Meersman, S. C., Quinn, G. P., Schabath, M. B., Maingi, S., Merrill, J. K., Garrett-Mayer, E., Kaltenbaugh, M., Schenkel, C., & Chang, S. (2022). Sexual orientation and gender identity data collection in oncology practice: Findings of an ASCO survey. JCO Oncology Practice, 18(8), e1297–e1305. https://doi.org/10.1200/op.22.00084
  14. Kaneshiro, B., Geling, O., Gellert, K., & Millar, L. (2011). The challenges of collecting data on race and ethnicity in a diverse, multiethnic state. Hawai'i Medical Journal, 70(8), 168–171. https://pubmed.ncbi.nlm.nih.gov/21886309
  15. Lee, W. C., Veeranki, S. P., Serag, H., Eschbach, K., & Smith, K. D. (2016). Improving the collection of race, ethnicity, and language data to reduce healthcare disparities: A case study from an academic medical center. Perspectives in Health Information Management, 13(Fall), 1g. https://pubmed.ncbi.nlm.nih.gov/27843424
  16. Narayan, K. A., & M. Siva Durga Prasad Nayak. (2021). Need for interactive data visualization in public health practice: Examples from India. International Journal of Preventive Medicine, 12(1), 16. https://pmc.ncbi.nlm.nih.gov/articles/PMC8106281/
  17. National Academies of Sciences, Engineering, and Medicine (NASEM). (2019). Integrating social care into the delivery of health care: Moving upstream to improve the nation's health. The National Academies Press. https://doi.org/10.17226/25467
  18. North American Association of Central Cancer Registries (NAACCR). (2020). Standards for cancer registries: Data standards and data dictionary. https://apps.naaccr.org/data-dictionary/?_gl=1*1qzcnrp*_ga*MTM1NjU2ODk4OC4xNzQ4NjI3NDgy*_ga_V7J8GWYK5P*czE3NDg2Mjc0ODIkbzEkZzEkdDE3NDg2Mjc4NzEkajYwJGwwJGgw
  19. Patel, M. I., Lopez, A. M., Blackstock, W., Reeder-Hayes, K., Moushey, E. A., Phillips, J., & Tap, W. (2020). Cancer disparities and health equity: A policy statement from the American Society of Clinical Oncology. Journal of Clinical Oncology, 38(29), 3439–3448. https://doi.org/10.1200/JCO.20.00642
  20. Pinheiro, P. S., Medina, H., Callahan, K. E., Kwon, D., Ragin, C., Sherman, R., & Kobetz, E. (2020). Cancer mortality among US Blacks: Variability between African Americans, Afro-Caribbeans, and Africans. Cancer Epidemiology, 66, 101709. https://doi.org/10.1016/j.canep.2020.101709
  21. Pinto, A. D., Aratangy, T., Abramovich, A., Devotta, K., Nisenbaum, R., Wang, R., & Kiran, T. (2019). Routine collection of sexual orientation and gender identity data: A mixed-methods study. Canadian Medical Association Journal, 191(3), E63–E68. https://doi.org/10.1503/cmaj.180839
  22. Shukla, A., Zeidan, R. K., & Saddik, B. (2024). Pediatric and adolescent cancer disparities in the Middle East and North Africa (MENA) region: Incidence, mortality, and survival across socioeconomic strata. BMC public health, 24(1), 3602. https://doi.org/10.1186/s12889-024-21155-8
  23. Siegel, R. L., Kratzer, T. B., Giaquinto, A. N., Sung, H., & Jemal, A. (2025). Cancer statistics, 2025. CA: A Cancer Journal for Clinicians. 75(1). 10-45. https://doi.org/10.3322/caac.21871
  24. W., Asim, T., Aakash, Ramachandran, R. P., Stewart, P. A., & Rasool, G. Multimodal data integration for oncology in the era of deep neural networks: A review. Frontiers in Artificial Intelligence, 7, 1408843. https://doi.org/10.3389/frai.2024.1408843
  25. Zavala, V. A., Bracci, P. M., Carethers, J. M., Carvajal-Carmona, L., Coggins, N. B., Cruz-Correa, M. R., Davis, M., de Smith, A. J., Dutil, J., Figueiredo, J. C., Fox, R., Graves, K. D., Gomez, S. L., Llera, A., Neuhausen, S. L., Newman, L., Nguyen, T., Palmer, J. R., Palmer, N. R., … Fejerman, L. (2021). Cancer health disparities in racial/ethnic minorities in the United States. British Journal of Cancer, 124(2), 315–332. https://doi.org/10.1038/s41416-020-01038-6
  26. Zhang, H., Guo, Y., Prosperi, M., & Bian, J. (2020). An ontology-based documentation of data discovery and integration process in cancer outcomes research. BMC Medical Informatics and Decision Making, 20(S4). https://doi.org/10.1186/s12911-020-01270-3

Resources:

  1. California Cancer Registry (CCR) - https://www.ccrcal.org
  2. California Cancer Registry (CCR), CAL*Explorer - https://explorer.ccrcal.org
  3. California Health Interview Survey (CHIS) - https://healthpolicy.ucla.edu/our-work/california-health-interview-survey-chis/about-chis
  4. California Health Maps - https://www.californiahealthmaps.org
  5. California LGBTQ Health & Human Services Network, LBTQ Health Equity Initiative - https://californialgbtqhealth.org/lbtq-health-equity-initiative/
  6. California Open Data Portal - https://data.ca.gov/
  7. California Pan-Ethnic Health Network (CPEHN) - https://www.cpehn.org/
  8. Centers for Disease Control and Prevention (CDC), Behavioral Risk Factor Surveillance System (BRFSS) - https://www.cdc.gov/brfss
  9. Centers for Disease Control and Prevention (CDC), National Program of Cancer Registries (NPCR) - https://www.cdc.gov/cancer/npcr
  10. Centers for Disease Control and Prevention (CDC), NCHS Research Data Center (RDC) - https://www.cdc.gov/rdc/index.htm
  11. Fenway, "Collecting Sexual Orientation and Gender Identity (SO/GI) Data In Electronic Health Records" - https://fenwayhealth.org/wp-content/uploads/4.-Collecting-SOGI-Data.pdf
  12. Journal of Clinical Oncology, "Why Good Cancer Care Means Gender-Affirming Care for Transgender Individuals With Gendered Cancers: Implications for Research, Policy, and Practice" - https://ascopubs.org/doi/10.1200/JCO.22.01857
  13. Medical Expenditure Panel Survey (MEPS) - https://www.meps.ahrq.gov/
  14. National Cancer Institute (NCI), Surveillance, Epidemiology, and End Results (SEER) Program - https://seer.cancer.gov
  15. National Health Interview Survey (NHIS) - https://www.cdc.gov/nchs/nhis/index.htm
  16. National Institutes of Health (NIH), "Strategies for Advancing Sexual Orientation and Gender Identity (SOGI) Data Collection in Cancer Research" - https://pmc.ncbi.nlm.nih.gov/articles/PMC11458257/
  17. Planned Parenthood, Sex and Gender Identity - https://www.plannedparenthood.org/learn/gender-identity/sex-gender-​identity#%3A~%3Atext=What%27s%20assigned%20sex%20%28aka%20%E2%80%9Cbiological%2Ceggs%20have%20an%20X%20chromosome.
Page Last Updated :