Cancer screening is incredibly beneficial, but only when it’s done right. Unfortunately, too many people are falling through gaps in the system, according to a new report from PROSPR II (Population-based Research to Optimize the Screening PRocess), funded by the National Cancer Institute, or NCI, and the American Cancer Society.
Findings published in September in the Journal of the National Cancer Institute, or JNCI, show “important gaps in care across the screening continuum,” per Fred Hutch Cancer Center epidemiologist Christopher “Chris” Li, MD, PhD, a co-principal investigator of the PROSPR II Consortium.
“People often think about screening as, ‘Did you get a colonoscopy, yes or no?’ and that's the end of it,” said Li, holder of the Helen G. Edson Endowed Chair for Breast Cancer Research. “But there are multiple steps in the screening process that need to be completed in a timely way to realize the full benefits of cancer screening.”
Those steps include:
1. Getting preventive screenings in the first place once you reach the right age;
2. Following up with regular surveillance screenings if you’ve been told you are at a higher risk for developing a cancer;
3. Pursuing any diagnostic tests recommended after your screening,
4. Initiating treatment if you’re diagnosed with cancer.
Unfortunately, Americans are not following through which each of these steps, particularly with regard to getting screened in the first place, following up with regular surveillance when there are abnormal findings and scheduling those diagnostic tests.
“Screening is an effective tool for reducing the burden of cancer,” Li said. “But it’s a complex process with multiple steps and there are many things that can get in the way. This study provides a way to identify what these gaps are and so we can develop interventions to try to address them.”
Originally launched in 2011, the first PROSPR study was designed to evaluate and improve the cancer screening process for breast, colorectal and cervical cancer by gathering data from 10 health care institutions.
“This project was envisioned to try to understand different points in the cancer screening process where things could potentially break down,” Li said. “Where people could be not getting the type of screening, or follow-up, or even treatment that they should be getting based on their results.”
Currently in its 12th and final year, the second consortium study, PROSPR II, was designed to evaluate and improve screening for cervical, colorectal and lung cancer using data from another 10 health systems, including Kaiser Northern California, Kaiser Southern California, Kaiser Washington, Parkland/UT-Southwestern, Partners CancerCare, Kaiser Colorado, University of Pennsylvania, Marshfield Clinic, Kaiser Hawaii and Henry Ford Cancer Institute.
Screening data used for the analysis was from 2018. Fred Hutch served as the data coordinating center for both the PROSPR I and PROSPR II studies.
“That means we help develop research questions, design projects and lead data analyses,” Li said. “We work to harmonize and integrate the data across all of the different participating institutions and as well as conduct statistical analysis.”
The vision for the PROSPR Consortium, Li said, was to include a “variety of different health care delivery systems” — large HMOs (health maintenance systems), small private practices and safety net hospitals — in order to get an accurate picture of the cancer screening process across the entire U.S.
“There’s a mix of these different types of institutions included in the different groups that make up the cervical, colorectal and lung cancer teams,” he said.
Researchers also included people with both private insurance and public insurance — that is, Medicare, Medicaid and CHIP, or Children’s Health Insurance Program.
CERVICAL CANCER SCREENING: Cervical cancer is driven by the human papilloma virus or HPV. The HPV vaccine — generally given young — eliminates cervical cancer risk, along with that of other HPV-driven cancers. Screening is usually a Pap test every three years starting at age 25 and/or a primary HPV test every five years (read the full ACS recommendations). Talk to your primary care provider or find one through UW Medicine Primary Care. Want to learn more? Read up on cervical cancer and Fred Hutch’s research in this area.
COLORECTAL CANCER SCREENING: Talk to your primary care provider or UW Medicine Primary Care can help you get started with screening. You may be referred for a colonoscopy or a different screening test. If you need a colonoscopy, call 206.606.5342 to schedule your procedure at the Fred Hutch Sloan Clinic. Learn more about colonoscopies.
LUNG CANCER SCREENING: Survival rates for lung cancer improve dramatically when it is detected early. Both Fred Hutch and UW Medicine offer screening for people at high risk for lung cancer via low-dose CT scan. Talk to your primary care provider about whether you qualify for this screening. Fred Hutch and UW Medicine offer screenings at Fred Hutch Sloan Clinic; UW Medical Center - Roosevelt; Harborview Medical Center; UW Medicine Eastside Specialty Center and UW Medicine Primary Care at Outpatient Medical Center. Please call 206.606.1434 if you have questions or want to learn more about the Fred Hutch Lung Cancer Screening Program.
When PROSPR II researchers looked at the overall proportions of timely screening, surveillance and diagnostic testing, they found many discrepancies:
Li and colleagues found even more discrepancies when they factored in peoples’ insurance status.
In cervical cancer, for instance, people without insurance had a much lower rate of screening, surveillance testing and diagnostic testing than those with insurance.
How much lower? Li said 52% of patients with private insurance got a cervical cancer screening test, but only 21% of those without insurance got a cervical cancer screening test.
“When we looked at colorectal and lung cancer, we found other differences,” Li said. “The most pronounced differences were those related to health insurance status, socioeconomic status based on where people lived, and race/ethnicity. Those were probably the three strongest predictors of whether or not people were getting these appropriate tests.”
Their findings also underscore the need for not just interventions to improve initial screening visits, but interventions and policies to improve the follow-up of abnormal results and surveillance after screening. Read more about the importance of follow-up after lung cancer screening.
“These findings support the need for clinical infrastructure to support care delivery across the screening continuum,” the authors wrote. Even within large health systems with EHRs, or electronic health records, and screening reminders, “performance was suboptimal.”
Additional analysis provided the following observations and insights:
Li said the PROSPR II Consortium will continue to publish additional analyses going forward, but the data in this study “provides a way to identify what the gaps are so we can develop interventions to address them.”
When patients don’t follow up on recommended surveillance, Li said screening reminders could be sent out via electronic health records or via other methods.
“If we can understand who that population is, then we can build things into our health care system to make sure those people aren’t falling through the cracks,” he said. “That’s where the opportunities are.”
While many are turning to shiny new technologies, influencer-endorsed scans or unproven supplements to reduce their risk of cancer, Li said cancer prevention is really about adhering to the basics.
“As population scientists, we’re very committed to the idea of cancer prevention,” he said. “If we were able to get people to apply even the basic knowledge and tools that we have, whether it’s timely cancer screening and follow-up or helping people stop smoking or promoting physical activity or getting vaccinations for HPV, we would have an enormous impact on improving our health.”
Funding for this study was provided in part by CRP-22- 080-01-CTPS from the American Cancer Society, the National Cancer Institute and Kaiser Permanente.
Diane Mapes is a senior editor and writer at Fred Hutch Cancer Center, who's written for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor and patient advocate, you can reach her at dmapes@fredhutch.org or doublewhammied.com / @double_whammied / @doublewhammied.bsky.social. Just diagnosed and need information and resources? Visit our Patient Care page.
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