Quality Data, Genetic Testing Can Reduce Cancer Care Disparities

Policymakers in Wisconsin have developed a ten-year plan to reduce cancer care disparities by improving data quality and expanding access to genetic testing.

Created by the Wisconsin Care Collaborative, the Wisconsin Cancer Plan 2020-2030 offers evidence-based, sustainable solutions to reduce the burden of cancer throughout the state. Cancer is a leading cause of death in Wisconsin, with nearly 12,000 deaths and more than 30,000 new diagnoses each year.

“The burden of cancer remains vast, taking a physical, emotional, social, and financial toll on patients, families, caregivers, and communities,” collaborative members wrote.

“Unfortunately, some of our communities are burdened far more than others, because of historical and continued unjust allocation of resources and access to care.”

The prevalence of cancer care disparities is a significant issue for health systems across the US. A recent study published in JTO Clinical and Research Reports showed that black individuals with extensive-stage small cell lung cancer are less likely to receive chemotherapy for their disease compared to white and other racial groups.

“Our study highlights the disparities that can exist in healthcare, and the impact that race and socioeconomic status can have on a patient’s experience throughout their treatment,” said Umit Tapan, MD, a thoracic oncologist at Boston Medical Center and the study’s corresponding author. 

Wisconsin’s cancer plan aims to reduce the health disparities that exist in cancer care. This will include prioritizing health improvement approaches that engage and benefit communities at highest risk of health-related inequities.

To accomplish this task, members of the collaborative noted that leaders should collect, examine, and disseminate data on traditionally underrepresented populations. However, this will require lawmakers to fill in gaps in data and improve the quality of information collected.

“To understand the full burden and impact of cancer in Wisconsin, we need reliable, quality data,” the collaborative wrote in the report. “Data helps us understand where to allocate our resources, where progress is made, and where we need additional work.”

Policymakers will need to identify existing data sources and collect missing data to monitor trends within and across underrepresented populations, members stated. Additionally, leaders should track populations with the highest cancer morbidity and mortality rates based on factors like income, race, ethnicity, geography, and other social characteristics.

The plan also highlights the need to support the Wisconsin Cancer Reporting System in its mission to provide accurate, timely data. Leaders should increase reporting from non-hospital facilities like pathology labs, as well as from out-of-state facilities that diagnose or treat Wisconsin residents.

The collaborative also called for policymakers to improve the comprehensiveness of data captured by existing sources. This will require leaders to collect data on the social determinants of health, and collaborate with other cancer-related stakeholders to help facilitate data linkages and determine what further data should be collected.

Members recommended that leaders explore existing data sources to identify areas for improvement and the highest need regarding screening, diagnosis, treatment, and survivorship.

In addition to data quality and access, reducing cancer care disparities will require policymakers and healthcare leaders to expand the availability of genetic testing.

“Screening and early detection can find cancer at earlier stages when it is easier to treat, and can identify pre-cancers that can be addressed before cancer occurs,” collaborative members said.

“Some patients and families have a higher genetic risk for certain cancers. Genetic counseling and testing can help identify patients who may need increased cancer screening or screening at earlier ages.”

To expand access to genetic testing, members said that healthcare leaders should train providers about the importance of cancer genetic risk assessment and counseling. Health professionals should also receive training to conduct initial cancer risk assessments and refer patients to a qualified cancer genetic counselor when appropriate.

Moreover, it will be crucial for leaders to establish insurance coverage for cancer genetic risk assessment and counseling. Healthcare leaders will need to educate insurance companies about the benefits and cost-saving potential of cancer genetic risk assessments and counseling.

Expanding coverage for telehealth services will also help increase access to genetic testing, the members noted.

With this plan, the Wisconsin Care Collaborative expects to improve cancer outcomes and ultimately reduce cancer care disparities.

“Every Wisconsinite should have the ability to reduce their cancer risk, receive timely diagnosis of and quality treatment for cancer, and enjoy the highest possible quality of life beyond a cancer diagnosis,” collaborative members concluded.

“The Wisconsin Cancer Plan 2020-2030 lays forth a blueprint for action with a singular vision: creating a healthier Wisconsin by reducing the burden of cancer for everyone. It spans the entire cancer control continuum, from risk reduction through end of life. The success of the Wisconsin Cancer Plan depends on people and organizations from multiple sectors coming together to take action.”