July 11, 2023

The Cancer Burden in the Hispanic Population in California

Dr. Alain Monnereau, MD, PhD

PI, Research Program Director

Cancer Registry of Greater California

Dr. Monnereau presented "The Cancer Burden in the Hispanic Population in California" at the GRELL meeting in France on June 1st. The association aims to coordinate the activities of the "Group for Epidemiology and Cancer Registry in Latin Language Countries" (GRELL), gathered since 1976. GRELL promotes epidemiological cancer research, mainly through the registration of cases in geographically defined populations. The Group collaborates with the International Association of Cancer Registries (IACR) and the European Network of Cancer Registries (ENCR), as well as other scientific associations working in the same field.

Dr. Monnereau's presentation focused on describing the cancer burden in the Hispanic population in California. He briefly gave background on the diverse California population, noting that 40% of Californians are Latino (or Hispanic), over 10 million Californians are immigrants (27% of Californians are foreign-born) and while California’s population is aging, it is young compared to the rest of the country.

He further noted that cancer incidence is lower in the Hispanic population compared to non-Hispanic white patients for the four most frequent cancer sites: Female Breast, Colorectal, Lung, and Prostate. Cancer incidence is higher for infection-related cancers such as Stomach, Cervical, and Liver. The overall cancer survival rates for Hispanics in California are generally similar to those of non-Hispanic whites for breast, Prostate and colorectal cancers. For lung cancer, Hispanic men and women in California have slightly lower survival rates for lung cancer compared to non-Hispanic whites, possibly due to later diagnosis and lower rates of early detection. The prevalence of known risk factors in the Hispanic population are a lower prevalence of smoking and alcohol consumption, higher obesity, higher Helicobacter Pylori infection, and higher Hepatitis B Virus and Human Papilloma Virus infection with a noted lower vaccination rate. Cancer screening in the Hispanic population is also known to be lower compared to non-Hispanic whites. In addition, there are significant disparities in social determinants of health among Hispanics diagnosed with cancer in California. They are more likely to live in disadvantaged areas, more often covered by Medicaid/Public insurance, more likely to be diagnosed at a later stage of disease, and have more comorbidities at the time of diagnosis.

The Hispanic Paradox, an epidemiological finding that Hispanics tend to have better or comparable mortality or survival rates to non-Hispanic white patients, even though Hispanics have lower average income and education has had multiple thoughts as to the reason. Some factors that researchers have attributed to this paradox are cultural value and belief, acculturation, and healthy migrant effect.

In conclusion, because of the demographic trends’ differences between US-born and foreign born, the Hispanic subpopulations should be further studied to better consider this diverse cultural and genetic backgrounds, which can impact their cancer risk. These results underscore the opportunities for reducing disparities in cancer survival through earlier detection and efforts to address inequities in social determinants of health.

The Importance of Cancer Registry Data - A Special Report to the American Cancer Society's Legislative Roundtable

Robert H. McLaughlin, JD, PhD

Special Program Advisor

Cancer Registry of Greater California

CRGC was invited to participate in the American Cancer Society’s recent Legislative Roundtable, information about which can be found here.

Robert McLaughlin spoke to the topic of the legality and importance of cancer registry data and data sharing from the perspective of a regional cancer registry in California. A shortened version of his remarks follows below:

The topic of the importance of cancer registry data, and of sharing data, goes to the heart of our cancer registry statute and the imperative of data use. To the extent that our registries, like all disease registries, serve our population as infrastructure of public health, the topic also bears an inherent relationship to the value or the return for the citizen.  Therein lies the promise of science to afford evidence-based interventions and policies that reduce the cancer burden. Cancer registry professionals thus bear the responsibility to balance the interests of individual patient privacy and the collective benefits of taking on cancer with a complete, accurate, and timely census of cancer cases that affords us the possibility of understanding who gets cancer, when, where, and why.

California’s cancer registry statute is direct—it says, “any regional cancer registry designated by the department shall use the information to determine the sources of malignant neoplasms and evaluate measures designed to eliminate, alleviate, or ameliorate their effect.”  Our statute is not unique. States like New Jersey, Louisiana, and Michigan have enacted similar cancer registry laws that specifically focus on epidemiologic uses of reported cancer data. In addition to the mandate on use of cancer data, California’s regional registries also have a duty to make data available to researchers. In this regard, our statute shows its age. The language—written in the 1980s—contemplates a model of research that involves a single scientist recipient of data or cancer case listings and who works with a high level of independence and autonomy.  Today’s reality is very different; science is hugely collaborative. It is performed with teams, it is multi-disciplinary, and it leverages technology so that when we talk about cancer epidemiology or cancer surveillance, we are talking about “Big Data” in research. 

Alongside the promises of Big Data, there are risks associated with unauthorized or inadvertent exposure of personal, financial, medical, and other sensitive information: the consequences of identity theft, harms to reputation, discrimination in regard to employment or insurance, and loss of privacy rights with respect to our bodies, our genetics, and our disease. The research community lives in this same era of intense documentation and the vulnerabilities that go with it. For this reason, we can see in the 2018 revisions to the federal Common Rule for human subjects protection in research a serious effort to distinguish between appropriate protections for identifiable and de-identified information, or information that presents potential harms and information that is reasonably unlikely to cause such harms. Those lines of distinction are very useful to distinguishing cancer registries as registries of cancer cases, and not, in the first instance, registries of people.

For an individual person or patient, this topic has a different register: The question of the legality of data sharing—at least in the US where many of our most impactful rights have expression at an individual level—invariably comes back to the self. How does the imperative of data use relate to me?  In this regard, I have a unique privilege because I see our cancer registry both as a public health enterprise, but also as the repository of my parents’ cancers, and of a sibling’s cancer case. The science is beginning to tell me and my family that these cancer cases are connected, that they tell a story together of relatedness—perhaps with a genetic component—that is inaccessible through the lens of a single case. Almost against the grain of our conception of an individual patient, and the privacy rights attached to an individual patient, our registries open up connections between and among us. This is exactly what they were conceived to do. 

The science is unfolding in amazing ways. The California SEER Programs at which the regional registries at UCSF and USC are, for example, working with CRGC to participate in a global project, “VENUSCANCER” that will explore world-wide differences in survival from three common women’s cancers: breast, ovarian, and cervical. VENUSCANCER targets political toleration of unfairness in access to affordable cancer treatment as fundamentally unacceptable.

We welcome the connection between cancer research and dignity. After all, it is our interest in human dignity that enables our cancer registry to be established in law. The legality of data sharing, then, follows from a combination of using our resources for the benefit of people, as people, and secondly from bringing rigor and discipline to those uses when and where the benefits present too much of a compromise or burden on other rights that also serve our interests in dignity and productive human agency. The various techniques that we use include: 1) Organizing data uses as research within the purview of human subjects protection regulations; 2) Managing applications for data and operationalizing data access and use permissions with data use agreements that ensure physical, technical, and administrative controls: and 3) Holding investigators responsible for the return and/or destruction of data at the end of their research activities.

These techniques are intended to reflect and realize a balance of interests—the sweet spot between compromise and consensus in the legislature that gives Californians our law, or between what is possible (marshaling the power of Big Data, for example), and what is prudent (adhering to deidentification where feasible, drawing down the spirit of the privacy principal in the minimum necessary use rule, and understanding a human biospecimen as an encrypted text that carries not only intimate detail about one’s own body but possibly also a map to fate and destiny). 

Ultimately, in answer to a question of legality and importance of data access, I trust that when we put scientists into conversation with the population they serve and the lawmakers who represent us all, scientists and citizens alike, we’ll get it right.

Revised from live program commentary, June 29, 2023 

SEER POC 2020 Diagnosis Year Study Update

Anshu Shrestha, MPH, PhD

Research Scientist III/ CRGC SEER Co-I

Once again, this year, the Research Unit staff at the Cancer Registry of Greater California (CRGC), with additional support from the Data Collection Unit, are hard at work collecting and abstracting medical records for this year’s SEER Patterns of Care (POC) study. SEER POC studies are mandated by the National Cancer Institute (NCI) to describe, characterize, and compare practice patterns and treatments provided for cancer in different geographic areas of the United States. This activity requires us to contact hospitals and physicians to enhance the cancer care related information that we received. The CRGC has participated in all POC studies since 2001, when it became part of the SEER program.

The purpose of this year’s POC study is to investigate patterns of care for patients diagnosed with breast and colorectal (CRC) cancers diagnosed in 2020, including diagnosis, treatment, biomarkers and therapies offered. This study also aims to collect data/documentation of the effects of COVID-19 pandemic on screening, diagnosis, treatment and palliative care for these cancers. CRGC was asked to abstract information for a total of 900 cancer patients (approximately 450 breast cancer and 450 colorectal cancer patients). A sample of patients were selected to be included based on the eligibility criteria provided by the NCI using the stratified random sampling approach and strata with small number of cases (e.g. patients < 35 years old diagnosed with CRC) were oversampled to ensure more stable estimates can be obtained.

The success of the SEER POC Study is dependent on the help of hospital registrars to provide access to electronic medical records or electronic copies, or, if not available, paper copies of requested medical records. Requests for medical records have already been sent to about 90% of the hospital registry and medical records departments. Currently, approximately half of the requested records have arrived and most of them were received via one of the electronic access options, for which, the study team is very grateful. This helps our staff process the records and abstract data more efficiently.  We want to extend our thanks to all registrars who have contributed to the study this year. If you have not yet heard from us, you will be hearing from one of us soon. 

Treatment Utilization for High Grade Non-muscle Invasive Bladder Cancer

Eric Stewart, MPH

Research Scientist I/Regional Cancer Epidemiologist

Cancer Registry of Greater California

Bladder cancer is a highly recurrent cancer and a leading cause of cancer morbidity in the US, with an estimated 81,000 cases diagnosed each year. Approximately 70-80% of newly diagnosed patients have non-muscle invasive bladder cancer (NMIBC). Treatment guidelines advise NMIBC patients receive a transurethral resection of bladder tumor (TURBT) followed by adjuvant intravesical chemotherapy or bacillus Calmette-Guérin (BCG) immunotherapy, depending on tumor grade. Intravesical therapy (IVT) involves administering drugs directly into the bladder instead of orally or intravenously. High grade tumors are more aggressive in nature, with approximately 20-50% of cases progressing to invasive disease within 5 years. For high grade NMIBC (hgNMIBC), American Urological Association (AUA) and National Comprehensive Cancer Network (NCCN) guidelines recommend TURBT followed by intravesical BCG immunotherapy as preferred treatment and standard of care (SOC). Evidence shows patients that receive SOC treatment have better survival outcomes and lower risk of disease progression and recurrence.

The CRGC Research Unit recently collaborated with two urologists at the UC Davis Comprehensive Cancer Center to examine disparities in utilization of intravesical chemotherapy and immunotherapy among patients diagnosed with first primary hgNMIBC in California between 2006-2018. A total of 19,237 eligible patients were identified, most of whom were male (81%), non-Hispanic White (75%), and 70 years or older at the time of diagnosis (60%). Our study showed IVT is underutilized in the hgNMIBC population, with only 30% of patients receiving immunotherapy and less than half receiving any type of IVT as part of their initial course of treatment. We also observed significantly lower utilization of IVT among patients over 80 years of age at diagnosis (35% vs 46-50% for those <80 years of age), from lower socioeconomic status (SES) neighborhoods (36-40% vs 52% for those from highest SES neighborhoods), and among those without private insurance or a life partner at the time of diagnosis (40-41% vs 50% for those with private insurance, 41% vs 47% for those who were married/partnered, respectively). Age and SES were associated with underuse of any IVT while insurance and marital status were only associated with underutilization of immunotherapy.

This study highlights the continued underutilization of SOC treatment, which has not improved from a decade prior. Receipt of SOC treatment is critical for helping prevent or delay both disease progression and recurrence, as well as improve survival outcomes for hgNMIBC patients. Our findings also show certain sociodemographic subpopulations are less likely to receive SOC treatment, indicating a need to better understand the underlying mechanisms that lead to this disparity. 

The results from this study should be interpreted with an understanding of the limitations. We selected only high grade patients for this analysis, which could exclude intermediate risk patients with large volume tumors or known recurrences within 1 year. Also, the registry lacks data on follow-up treatment and long-term surveillance, which poses challenges for studying a highly recurrent disease like hgNMIBC. However, the cancer registry collects data on all reportable cancer cases, which allows for fairly complete assessment of the first course of treatment received.



This important research would not be possible without the continued efforts of registrars and registry staff to collect and abstract complete and high quality cancer data. More information about this study can be found in the accompanying manuscript recently published in Urologic Oncology: Seminars and Original Investigations (https://pubmed.ncbi.nlm.nih.gov/37295979/).