Improving Colorectal Cancer Diagnosis

The following is an interview with Andrea Goodman, MSW, MPH, Vice President of Patient Support & Research Strategy at the Colorectal Cancer Alliance (Alliance), the leading colorectal cancer nonprofit organization. The Alliance empowers a nation of allies who work with us to provide support for patients and families, caregivers, and survivors; to raise awareness of and access to colorectal cancer prevention and early detection methods; and to inspire efforts to fund critical research.

When detected early, colorectal cancer is one of the most preventable and treatable forms of cancer, yet delayed diagnosis is a significant issue. What are some of the causes of the diagnostic delays?

“Delays occur for many reasons, such as not receiving a strong recommendation for screening from a healthcare provider, fear of the test or its outcome, lack of symptoms or family history of colorectal cancer, or access to quality care,” said Goodman.

Colorectal cancer is a silent disease. It often develops without symptoms. On-time screening is an essential tool for both catching it early and preventing it altogether. Yet delays in preventive and diagnostic screening occur for a number of reasons, many of which are based on misunderstanding of the disease, screening methods, and personal risk.

According to the Alliance, trusted messengers, namely healthcare providers, have a lot of pull in whether a patient gets screened. Strongly expressing the importance of on-time screening, even with patients who lack symptoms or family history, is critical to catching polyps (abnormal growths in the colon) before they can become cancer. And if cancer is already present, on-time screening helps providers catch it early, when it is most treatable.

Further, many patients believe a lack of symptoms, combined with a healthy lifestyle, means they are not at risk for colorectal cancer, even if they have family history. And if their provider does not make a strong recommendation, it feeds into this narrative resulting in delayed screenings. Colorectal cancer can develop in anyone, regardless of family history, physical health, and age.

One in three people are not up to date with colorectal cancer screening, yet various options exist. What are the major barriers in improving preventative screening for colorectal cancer?

“There is a stigma that surrounds the gold standard of screening: the colonoscopy,” said Goodman. “A colonoscopy, which is the only screening method that can detect and remove polyps before they become cancer, has long been met with patient resistance. A mix of fear, embarrassment, concerns about the invasive nature of the procedure, and a perceived lack of urgency can lead patients to delay screening.”

Screening by colonoscopy presents several concerns that lead to patients delaying screening. Some patients find it difficult to take time off work for screening, bring a helper, or get the required ride home from the outpatient procedure. Those without insurance also face a high-cost burden, in addition to potential lost wages for a day off work.

Other screening tests can be done at-home, including FIT or sDNA-FIT tests. These stool-based tests address some of the access and time barriers of colonoscopy. However, if a patient receives a positive test result, they will still need a follow-up colonoscopy. Waiting to get screened increases the risk of a later-stage diagnosis. This is especially problematic for patients who need a follow-up colonoscopy. A study in Gastroenterology found that patients with a positive stool-based screening test who waited 16 months for colonoscopy increased their odds of being diagnosed at a late-stage by 33 percent.

Misunderstandings around colorectal cancer screening are reflected in both the patient and provider experiences. For patients under 50 experiencing symptoms, providers often do not respond with urgency. They often say the patients are “too young for colorectal cancer” and postpone screening. In the Alliance’s latest Never Too Young Survey Report, seventy-five percent of patients and survivors under 50 reported they saw at least two different physicians -- and 36% percent were seen by three or more physicians -- before receiving a correct diagnosis.

What is the Colorectal Cancer Alliance doing to improve earlier colorectal cancer diagnoses?

It is estimated that 1 in 24 people will be diagnosed with colorectal cancer in their lifetime.

The Alliance is raising awareness of not only the risks of colorectal cancer but also addressing the misconceptions associated with both screening and the disease in order to drive on-time screenings. Their prevention team has undertaken efforts to increase awareness of the lowered screening age with a focus on populations experiencing the greatest disparities in diagnosis and deaths. They also work to drive unscreened individuals to the Alliance’s digital screening navigation tool to receive a personalized colorectal cancer screening recommendation and educational resources. In addition, the Alliance provides direct support for screening completion including ongoing navigation and, if necessary, financial support, access to free screening, and referrals to services and second opinions.

“Our goal is to get people screened,” said Goodman. “We are working to address the declines in preventive and diagnostic colorectal cancer screenings and. Screening saves lives and will help achieve the Alliance’s mission to end cancer in our lifetime.”

What tools or products have you developed to improve diagnostic processes and safety? How did you implement them?

To assist with diagnostic improvement, the Alliance developed the colorectal cancer screening navigation tool. The tool offers an easy-to-understand and engaging user experience. Visitors to the site answer a few simple questions and receive a personalized and clinically valid screening recommendation that fits their risk level. They are also given timely information about colorectal cancer as a preventable disease, its risk factors, and screening methods based on the individual’s responses. The tool provides a valuable resource to both patients and healthcare providers, who can use it to seed shared decision-making conversations with their patients.

“As the Alliance gains a deeper understanding of patient needs via its screening navigation platform, we will continue to optimize our digital and live navigation programs to enhance messaging, usability, and functionality to improve access to screening and on-time screening completions,” said Goodman.

The organization is also working to add features to the tool, such as creating a tailored experience for screening follow-up and completion based on user behaviors, implementing provider referral and scheduling options, and providing individuals with access to low-cost or no-cost colorectal cancer screening through partner provider donations.

You’ve announced an effort that addresses inequities in colorectal cancer diagnosis, can you tell us more about the program?

According to the Alliance, Black Americans are 20% more likely to be diagnosed with colorectal cancer and 40% more likely to die from it than White Americans. Multiple, connected variables account for the disparity, including:

  • Differences in access to early detection modalities and receipt of timely, high-quality treatment.
  • Systemic racism that impacts access to high-quality care and mistrust of the medical system.
  • Implicit bias within healthcare – including attitudes or stereotypes that affect healthcare providers’ understanding, actions, and decisions in an unconscious manner.
  • Social determinants of health that contribute to comorbidities and also increase risk of colorectal cancer.

In July, the Colorectal Cancer Alliance announced a major investment by three industry partners to address health inequities in colorectal cancer among populations who face barriers in access to screening and prevention. Exact Sciences, LetsGetChecked, and Cottonelle with partner BLKHLTH invested a total of $2.4 million through the Alliance to create access to life-saving screenings.

In addition, Brooks Bell, a young-onset colorectal cancer survivor and an Alliance Board of Directors member, committed to invest $1 million to kickstart a national campaign to brand colon cancer as “the preventable cancer” and raise money for a health equity fund at the Alliance.

The Alliance is committed to playing our part in building more equitable healthcare opportunities for all, and we will be launching the Health Equity Fund later this year to address inequities by providing funds for screening, diagnosis, care and treatment for underserved communities who need help the most. We are thankful for all our partners and ally leaders helping us close these gaps.

What were some barriers you needed to overcome in order to advance this work? How did you overcome them?

“We are the largest nonprofit dedicated to ending colorectal cancer in our lifetime, but we can’t do it alone. With our trusted leadership, we are working to convene partners and collaborators to fund critical research, provide financial assistance to at-risk Black U.S. residents and underserved communities to access high-quality screening and treatment,” said Goodman. “Colorectal cancer is severely underfunded so we need to inspire industry and philanthropic individuals to support efforts to address this largely preventable cancer.”

Why did the Colorectal Cancer Alliance decide to join the Coalition to Improve Diagnosis? What does being part of the Coalition mean to the Colorectal Cancer Alliance?

“We hear over and over from our community about the barriers they faced on their diagnostic journey. Patients are often not heard -- an experience that is magnified by bias -- and diagnoses are delayed as a result,” said Goodman.

For the Alliance, part of the solution to increasing awareness and subsequent screening rates is dependent on working collaboratively across the disease advocacy and clinical ecosystem to increase provider receptiveness in making a strong recommendation for screening, remove diagnostic screening barriers following a positive stool test, and create access to timely screenings while reducing the burden on the patient. The Alliance has identified collaboration with patients, constituents, and partner organizations as key to finding treatments and cures.

“No one organization can do it alone,” said Goodman. “And no treatment or cure will be as effective in ending colorectal cancer in our lifetime as universal access to on-time screening to prevent and catch this disease before it takes another life.”

Colorectal Cancer Alliance
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