The Current Landscape of Research Advocacy and Education for Patients with Colorectal Cancer.

OPINION STATEMENT: Research advocacy is an evolving concept and should be tailored for the colorectal cancer research community. Research advocacy training and evaluation must be designed for the patient community with their insight included at each step of engagement, training, and implementation. Patient advocates bring a great deal of expertise to the research review process, but it is important to ensure that their insight is appropriately placed, and they bring an appropriate orientation to the research process as the most informed patient. This can be accomplished in part by providing advocates with the proper training, employing universal core competencies, and applying principles of adult learning. Additionally, the research community, advocacy organizations, and industry partners must understand the need to diversify the voices that are being leveraged to guide research, recognizing the importance of adequate mental health tools and compensation commensurate with their experience. As a community, it is necessary that we create and implement training programs, as well as evaluate and measure their impact to continually improve and tailor the delivery of this specific education. Research advocacy has become a necessity to the field, and when implemented effectively, research advocates can have a significant impact on the delivery of health care research, improving health outcomes for all those affected by colorectal cancer.

Priorities of Unmet Needs for Those Affected by Colorectal Cancer: Considerations From a Series of Nominal Group Technique Sessions.

BACKGROUND: Colorectal cancer (CRC) is the third most common cancer among men and women in the United States. Patients and survivors experience a range of challenges, including anxiety, financial issues, long-term adverse effects, and more. The intent of this project was to assess the needs of the CRC community directly from survivors and their caregivers and to lay a foundation for ongoing support. METHODS: Twelve nominal group technique sessions were facilitated. Participants were randomized and presented with the following questions: "What information do you wish you had at the time of diagnosis?" and "What information do you need now as a survivor?" After the nominal group technique process, each statement's score was divided by the number of people in the session, providing the average to identify the top-ranked statements. Themes and subthemes were applied to statements. Results were compared between coders. RESULTS: There was a total of 79 participants, 49 of whom self-identified as a patient with or survivor of cancer. Patient/survivor demographics were as follows: stage IV disease (n=20), stage III disease (n=22), stage II disease (n=5), stage I disease (n=2), caregiver/family member (n=30), male (n=16), female (n=63), White (n=50), Native Hawaiian/Pacific Islander (n=1), Hispanic/Latino (n=13), Black/African American (n=11), Asian (n=1), and more than one race/ethnicity (n=3). The most frequent themes among responses to the first question were communication and coordination with care team and access to CRC resources. The most frequent themes among responses to the second question were psychosocial support and family/caregiver support. Frequent themes among responses across both questions were understanding treatment options and adverse effects. CONCLUSIONS: These findings highlight gaps in support for individuals affected by CRC, and lay a foundation for ongoing assistance. Future studies exploring differences based on disease stage, race/ethnicity, age, gender identity, geographic location, and tumor location are needed to further tailor support for those experiencing CRC. Themes identified in this project require a multidisciplinary approach to ensure that the unmet needs of survivors are addressed.

A Blueprint to Advance Colorectal Cancer Immunotherapies.

Immunotherapy is rapidly becoming a standard of care for many cancers. However, colorectal cancer had been generally resistant to immunotherapy, despite features in common with sensitive tumors. Observations of substantial clinical activity for checkpoint blockade in colorectal cancers with defective mismatch repair (microsatellite instability-high tumors) have reignited interest in the search for immunotherapies that could be extended to the larger microsatellite stable (MSS) population. The Cancer Research Institute and Fight Colorectal Cancer convened a group of scientists, clinicians, advocates, and industry experts in colorectal cancer and immunotherapy to compile ongoing research efforts, identify gaps in translational and clinical research, and provide a blueprint to advance immunotherapy. We identified lack of a T-cell inflamed phenotype (due to inadequate T-cell infiltration, inadequate T-cell activation, or T-cell suppression) as a broad potential explanation for failure of checkpoint blockade in MSS. The specific cellular and molecular underpinnings for these various mechanisms are unclear. Whether biomarkers with prognostic value, such as the immunoscores and IFN signatures, would also predict benefit for immunotherapies in MSS colon cancer is unknown, but if so, these and other biomarkers for measuring the potential for an immune response in patients with colorectal cancer will need to be incorporated into clinical guidelines. We have proposed a framework for research to identify immunologic factors that may be modulated to improve immunotherapy for colorectal cancer patients, with the goal that the biomarkers and treatment strategies identified will become part of the routine management of colorectal cancer. Cancer Immunol Res; 5(11); 942-9. ©2017 AACR.

Colon cancer screening for Colorado's underserved: a community clinic/academic partnership.

BACKGROUND: Colorectal cancer (CRC) is largely preventable by finding and removing adenomas, but many people have not been screened, especially the uninsured with low income. PURPOSE: To establish a statewide infrastructure to ensure that low-income Coloradans receive colonoscopy for CRC screening and diagnostic evaluation. DESIGN: In 2006, a statewide program to provide free colonoscopy to uninsured Coloradans was developed as a partnership between the University of Colorado Cancer Center and Colorado safety-net clinics. Funded by excise tax revenues, the Colorado Colorectal Screening Program (CCSP) successfully embedded screening into primary care, providing patient navigation support and reimbursement that allowed primary care providers to refer patients for colonoscopy. SETTING/PARTICIPANTS: More than 50 safety-net clinics joined the CCSP to provide colonoscopies to uninsured Coloradans with low income, aged ≥50 years or <50 years at elevated risk, lawfully present and needing CRC screening by American Cancer Society consensus guidelines. MAIN OUTCOME MEASURES: Process and clinical outcomes included people screened, show rates, patient satisfaction, and quality measures, such as adenoma detection rate, bowel cleansing quality, and timeliness of care. Program costs and benefits were estimated. The 2013 analysis was completed using 2006-2012 data on 13,252 of 13,774 people receiving colonoscopy. RESULTS: In 2006-2012, the CCSP screened 13,774 people, with 38% minorities and 39% men. Patient navigators ensured >90% of those referred attended their colonoscopy. Adenomas were removed from 27% of patients and 1% had cancers diagnosed. Total direct medical services cost was $998/person receiving colonoscopy. About 325 fewer future incident CRCs were predicted due to adenoma removal, projecting substantial future cost savings. CONCLUSIONS: The CCSP, a successful community clinic/academic partnership provides cost-effective CRC screening and prevention services to low-income uninsured Coloradans and establishes the infrastructure to support screening low-income Coloradans as Affordable Care Act reforms provide payer coverage for them.