A practical method for integrating community priorities in planning and implementing cancer control programs.

PURPOSE: Community engagement is essential in effective public health programs. This paper illustrates the methods used to engage community in the development of a multi-level implementation intervention to address cancer disparities related to hereditary cancer syndromes. METHODS: Implementation Mapping (IM), was used to guide the co-creation of an intervention. Key partners were recruited to a 13-member statewide community advisory board (CAB) representing healthcare and community-based organizations. As part of a needs assessment, a 3-round modified Delphi method with the CAB was used to identify implementation outcomes to use in later steps of IM. An anonymous online survey of a validated community engagement measure assessed CAB members' satisfaction with the process. RESULTS: Using a modified Delphi method as part of the needs assessment of IM, the CAB identified three broad categories of strategies: Changing infrastructure using patient navigation; training and educating patients, navigators and providers; and supporting clinicians in case identification and management. Self-reported satisfaction with the IM and Delphi process was high. CONCLUSIONS: Implementation Mapping facilitated the use of available evidence, new data, and community engagement to identify strategies to improve the delivery of programs to reduce hereditary cancer disparities. The modified Delphi method was easy to administer in a virtual environment and may be a useful for others in community-engaged research.

Prioritizing rural populations in state comprehensive cancer control plans: a qualitative assessment.

PURPOSE: The Centers for Disease Control and Prevention's National Comprehensive Cancer Control Program (NCCCP) requires that states develop comprehensive cancer control (CCC) plans and recommends that disparities related to rural residence are addressed in these plans. The objective of this study was to explore rural partner engagement and describe effective strategies for incorporating a rural focus in CCC plans. METHODS: States were selected for inclusion using stratified sampling based on state rurality and region. State cancer control leaders were interviewed about facilitators and barriers to engaging rural partners and strategies for prioritizing rural populations. Content analysis was conducted to identify themes across states. RESULTS: Interviews (n = 30) revealed themes in three domains related to rural inclusion in CCC plans. The first domain (barriers) included (1) designing CCC plans to be broad, (2) defining "rural populations," and (3) geographic distance. The second domain (successful strategies) included (1) collaborating with rural healthcare systems, (2) recruiting rural constituents, (3) leveraging rural community-academic partnerships, and (4) working jointly with Native nations. The third domain (strategies for future plan development) included (1) building relationships with rural communities, (2) engaging rural constituents in planning, (3) developing a better understanding of rural needs, and (4) considering resources for addressing rural disparities. CONCLUSION: Significant relationship building with rural communities, resource provision, and successful strategies used by others may improve inclusion of rural needs in state comprehensive cancer control plans and ultimately help plan developers directly address rural cancer health disparities.

Change agents in the oncology workforce: Let's be clear about community health workers and patient navigators.

Despite efforts of professional organizations and government agencies to solidify the professional identities of community health workers and patient navigators in the oncology workforce, the scientific literature perpetuates wide variation in the nomenclature used to define these natural change agents, who have proven efficacy in improving access to quality cancer care for historically marginalized populations. To disseminate, sustain, and scale-up these life-saving roles in cancer care, the oncology field must come together now to adopt clear and consistent job titles and occupational identities.

Flexibility, adaptation, and roles of patient navigators in oncology during COVID-19.

BACKGROUND: The impact of COVID-19 on cancer care during the first 6 months of the pandemic has been significant. The National Navigation Roundtable Workforce Development Task Group conducted a national survey to highlight the role of patient navigators (PNs). METHODS: An anonymous online survey captured how cancer care navigation changed during 2 phases: 1) March 13 to May 31, 2020; and 2) June 1 to September 4, 2020. Differences between the 2 time periods for categorical variables were assessed using χ2 tests, and 1-way analyses of variance were used for ordinal variables. RESULTS: Almost one-half of PNs expected changes in duties (49%) during phase 1. By phase 2, PNs showed greater confidence in retaining PN work (P < .001) and reduced changes to duties (P < .01). PNs reported new training on COVID-19 and telehealth during phase 1 (64% and 27%, respectively) and phase 2 (54% and 19%, respectively). Significant decreases in service delays were identified by phase 2 for cancer screening (P < .001), preventive care (P < .001), medical treatment (P < .01), cancer treatment (P < .001), and cancer survivorship services (P < .01). PNs reported that the top patient issues were COVID-19 concerns, medical care disruptions, and finances, and there were decreases in medical care disruptions (P < .01) during phase 2. PNs addressed myths related to mask use, COVID-19 spread, disbelief, risk, clinical changes, transmission prevention, and finances/politics. CONCLUSIONS: The PN role demonstrated resiliency and adaptability. Both clinical and nonclinical oncology PNs identified key patient needs and can provide connections with patient populations that have been economically and socially marginalized, which is necessary to build trust throughout the pandemic.

Evaluating the sustainability of patient navigation programs in oncology by length of existence, funding, and payment model participation.

BACKGROUND: For this study, the authors examined whether specific programmatic factors were associated with the sustainability of patient navigation programs. METHODS: This cross-sectional survey explored navigation programmatic factors associated with 3 measures of sustainability: 1) length of program existence, 2) reliance on sustainable funding, and 3) participation in alternative payment models. In total, 750 patient navigators or program administrators affiliated with oncology navigation programs in clinical-based and community-based settings completed the survey between April and July 2019. RESULTS: Associations were observed between both accreditation and work setting and measures of program sustainability. Accredited programs and larger, more resourced clinical institutions were particularly likely to exhibit multiple measures of sustainability. The results also identified significant gaps at the programmatic level in data collection and reporting among navigation programs, but no association was observed between programmatic data collection/reporting and sustainability. CONCLUSIONS: Navigation is not currently a reimbursable service and has historically been viewed as value-added in oncology settings. Therefore, factors associated with sustainability are critical to understand how to build a framework for successful navigation programs within the current system and also to develop the case for potential reimbursement in the future.

Barriers and opportunities to measuring oncology patient navigation impact: Results from the National Navigation Roundtable survey.

BACKGROUND: Patient navigation improves cancer care delivery for those most at risk for poor outcomes. Lack of sustainable funding threatens the full integration of navigation services into health care delivery systems. Standardized navigation metrics that document impact and identify best practices are necessary to support sustainability. METHODS: The National Navigation Roundtable administered a web-based, cross-sectional survey to oncology patient navigation programs to identify barriers and facilitators to the use of navigation metrics. The 38-item survey asked about data-collection practices and specific navigation metrics used by the program. Exploratory and descriptive statistics were used to identify factors associated with data collection and reporting. RESULTS: Seven hundred fifty respondents from across the country represented navigation programs across the continuum of care. Although 538 respondents (72%) reported participating in routine data collection, only one-half of them used data for reporting purposes. For the 374 programs that used electronic health records, only 40% had discrete, reportable navigation fields, and 25% had an identifier for navigated patients. Program funding was identified as the only characteristic associated with data collection, whereas the type of data collected was associated with work setting, participation in alternative payment models, and where on the continuum navigation services are provided. Respondents participating in an oncology accreditation program were more likely to collect specific outcome metrics across the continuum and to use those data for reporting purposes. The most common barriers to data collection were time (55%) and lack of support for complex data systems and/or platforms (50%). CONCLUSIONS: Inconsistent data collection and reporting of oncology navigation programs remain a threat to sustainability. Aligning data collection with oncology accreditation, funding, and reimbursement is a viable path forward.

What makes for successful patient navigation implementation in cancer prevention and screening programs using an evaluation and sustainability framework.

BACKGROUND: Integrating patient navigation into cancer prevention and early detection efforts has been effective in increasing cancer screening rates for the medically underserved. Few publications have focused on how cancer screening interventions in the primary care setting using patient navigation as a primary strategy are implemented, adapted, and sustained. In 2006, the University of Colorado Cancer Center established a statewide colorectal cancer screening program to reduce disparities and improve colorectal cancer (CRC) screening for the medically underserved in partnership with the safety net system. The program, known as the Colorado Cancer Screening Program (CCSP), has provided navigation into preventive screening for more than 35,000 patients. METHODS: To evaluate sustainability and implementation, the Practical, Robust Implementation and Sustainability Model was used to examine the implementation and impact. To complement this model, the CCSP adapted the Program Sustainability Framework and Clinical Sustainability Framework and Assessment Tools to measure the capacity of participating clinics to sustain the program beyond grant funding. RESULTS: The domains most frequently targeted for improvement in the sustainability plans were Workflow Integration (8 clinics), Communication, Planning, and Implementation (8 clinics), and Funding Stability (5 clinics). Activities in the implementation plans included revising workflows for efficiencies, incorporating quality improvement strategies, and building a business case for patient navigation. CONCLUSIONS: Findings from this sustainability planning process provide insight about program outcomes, satisfaction, and illustrate that although funding remains one of the key sustainability questions, many clinic systems have prioritized other specific domains to continue sustainability beyond grant funding.

Collective pursuit for equity in cancer care: The National Navigation Roundtable.

BACKGROUND: The evidence continues to build in support of implementing patient navigation to reduce barriers and increase access to care. However, health disparities remain in cancer outcomes. The goal of the National Navigation Roundtable (NNRT) is to serve as a convener to help support the field of navigation to address equity. METHODS: To examine the progress and opportunities for navigation, the NNRT submitted a collection of articles based on the results from 2 dedicated surveys and contributions from member organizations. The intent was to help inform what we know about patient navigation since the last dedicated examination in this journal 10 years ago. RESULTS: The online survey of >700 people described navigators and examined sustainability and policy issues and the longevity, specific role and function, and impact of clinical and nonclinical navigators in addition to the role of training and supervision. In addition, a full examination of coronavirus disease 2019 and contributions from member organizations helped further define progress and future opportunities to meet the needs of patients through patient navigation. CONCLUSIONS: To achieve equity in cancer care will demand the sustained action of virtually every component of the cancer care system. It is the hope and intent of the NNRT that the information presented in this supplement will be a catalyst for action in this collective action approach.

Comparing clinical and nonclinical cancer patient navigators: A national study in the United States.

BACKGROUND: A nationwide survey was conducted to examine differences between clinical and nonclinical oncology navigators in their service provision, engagement in the cancer care continuum, personal characteristics, and program characteristics. METHODS: Using convenience sampling, 527 oncology navigators participated and completed an online survey. Descriptive statistics, χ2 statistics, and t tests were used to compare nonclinical (eg, community health worker) and clinical (eg, nurse navigators) navigators on the provision of various navigation services, personal characteristics, engagement in the cancer care continuum, and program characteristics. RESULTS: Most participants were clinical navigators (76.1%). Compared to nonclinical navigators, clinical navigators were more likely to have a bachelor's degree or higher (88.6% vs 69.6%, P < .001), be funded by operational budgets (84.4% vs 35.7%, P < .001), and less likely to work at a community-based organization or nonprofit (2.0% vs 36.5%, P < .001). Clinical navigators were more likely to perform basic navigation (P < .001), care coordination (P < .001), treatment support (P < .001), and clinical trial/peer support (P = .005). Clinical navigators were more likely to engage in treatment (P < .001), end-of-life (P < .001), and palliative care (P = .001) navigation. CONCLUSIONS: There is growing indication that clinical and nonclinical oncology navigators perform different functions and work in different settings. Nonclinical navigators may be more likely to face job insecurity because they work in nonprofit organizations and are primarily funded by grants.

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.

Community health workers and non-clinical patient navigators: A critical COVID-19 pandemic workforce.

The COVID-19 pandemic has resulted in substantial morbidity and mortality and challenged public health agencies and healthcare systems worldwide. In the U.S., physical distancing orders and other restrictions have had severe economic and societal consequences. Populations already vulnerable in the United States have experienced worse COVID-19 health outcomes. The World Health Organization has made recommendations to engage at risk populations and communicate accurate information about risk and prevention; to conduct contract tracing; and to support those affected by COVID-19. This Commentary highlights the ways in which an existing and cost-effective, but underutilized workforce, community health workers and non-clinical patient navigators, should be deployed to address the COVID-19 pandemic. Community health workers and non-clinical patient navigators have skills in community engagement and health communication and are able to gain the trust of vulnerable communities. Furthermore, many community health workers and non-clinical patient navigators have skills in assisting community members with meeting basic needs and with navigating public health and healthcare systems. Members of this workforce are more than prepared to conduct contact tracing. State, local, tribal, and territorial public health agencies and healthcare systems should be collaborating with national, state, and local organizations that represent and employ CHWs/non-clinical patient navigators to determine how to better mobilize this workforce to address the COVID-19 pandemic. Furthermore, Congress, the Centers for Medicare & Medicaid Services (CMS), and individual states need to adopt policies to sustainably fund their critically needed services in the long term.

Financial burden and quality of life among early-onset colorectal cancer survivors: A qualitative analysis.

BACKGROUND: Colorectal cancer (CRC) diagnosed at ages <50 years old (early-onset CRC) has been increasing in the United States, resulting in a growing number of early-onset CRC survivors who may face significant financial and quality of life (QOL) challenges. OBJECTIVE: Identify themes from a patient advocate discussion about the impact of CRC on financial burden and QOL among early-onset CRC survivors. METHODS: We conducted a semi-structured, stakeholder discussion among 14 early-onset CRC survivors and one caregiver who were members of an advocacy group. The discussion focused on the financial and overall QOL impacts of CRC. The meeting was recorded, transcribed and coded in ATLAS.ti, using a thematic analysis approach. RESULTS: Cancer stage at diagnosis among advocates with CRC ranged from 2 to 4; about half of the attendees had no evidence of disease, and about half were undergoing treatment. Employment (career trajectory, lost wages, health insurance/benefits, performance) emerged as the dominant theme of the financial impacts discussion. Lifestyle impacts of disease and survivorship included both emotional and physical side-effects. Diagnosis experience, missing information about CRC treatment and side-effects, financial stress and strain on relationships were the primary themes for the overall QOL impacts. CONCLUSION: Given the growing incidence of CRC in those under 50, it is particularly important for providers to be aware of these patients' financial, emotional and QOL needs, and to develop care plans that specifically address these areas of concern for early-onset CRC survivors.

The impact of the rising colorectal cancer incidence in young adults on the optimal age to start screening: Microsimulation analysis I to inform the American Cancer Society colorectal cancer screening guideline.

BACKGROUND: In 2016, the Microsimulation Screening Analysis-Colon (MISCAN-Colon) model was used to inform the US Preventive Services Task Force colorectal cancer (CRC) screening guidelines. In this study, 1 of 2 microsimulation analyses to inform the update of the American Cancer Society CRC screening guideline, the authors re-evaluated the optimal screening strategies in light of the increase in CRC diagnosed in young adults. METHODS: The authors adjusted the MISCAN-Colon model to reflect the higher CRC incidence in young adults, who were assumed to carry forward escalated disease risk as they age. Life-years gained (LYG; benefit), the number of colonoscopies (COL; burden) and the ratios of incremental burden to benefit (efficiency ratio [ER] = ΔCOL/ΔLYG) were projected for different screening strategies. Strategies differed with respect to test modality, ages to start (40 years, 45 years, and 50 years) and ages to stop (75 years, 80 years, and 85 years) screening, and screening intervals (depending on screening modality). The authors then determined the model-recommended strategies in a similar way as was done for the US Preventive Services Task Force, using ER thresholds in accordance with the previously accepted ER of 39. RESULTS: Because of the higher CRC incidence, model-predicted LYG from screening increased compared with the previous analyses. Consequently, the balance of burden to benefit of screening improved and now 10-yearly colonoscopy screening starting at age 45 years resulted in an ER of 32. Other recommended strategies included fecal immunochemical testing annually, flexible sigmoidoscopy screening every 5 years, and computed tomographic colonography every 5 years. CONCLUSIONS: This decision-analysis suggests that in light of the increase in CRC incidence among young adults, screening may be offered earlier than has previously been recommended. Cancer 2018;124:2964-73. © 2018 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.

Optimizing colorectal cancer screening by race and sex: Microsimulation analysis II to inform the American Cancer Society colorectal cancer screening guideline.

BACKGROUND: Colorectal cancer (CRC) risk varies by race and sex. This study, 1 of 2 microsimulation analyses to inform the 2018 American Cancer Society CRC screening guideline, explored the influence of race and sex on optimal CRC screening strategies. METHODS: Two Cancer Intervention and Surveillance Modeling Network microsimulation models, informed by US incidence data, were used to evaluate a variety of screening methods, ages to start and stop, and intervals for 4 demographic subgroups (black and white males and females) under 2 scenarios for the projected lifetime CRC risk for 40-year-olds: 1) assuming that risk had remained stable since the early screening era and 2) assuming that risk had increased proportionally to observed incidence trends under the age of 40 years. Model-based screening recommendations were based on the predicted level of benefit (life-years gained) and burden (required number of colonoscopies), the incremental burden-to-benefit ratio, and the relative efficiency in comparison with strategies with similar burdens. RESULTS: When lifetime CRC risk was assumed to be stable over time, the models differed in the recommended age to start screening for whites (45 vs 50 years) but consistently recommended screening from the age of 45 years for blacks. When CRC risk was assumed to be increased, the models recommended starting at the age of 45 years, regardless of race and sex. Strategies recommended under both scenarios included colonoscopy every 10 or 15 years, annual fecal immunochemical testing, and computed tomographic colonography every 5 years through the age of 75 years. CONCLUSIONS: Microsimulation modeling suggests that CRC screening should be considered from the age of 45 years for blacks and for whites if the lifetime risk has increased proportionally to the incidence for younger adults. Cancer 2018;124:2974-85. © 2018 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.

Addressing Survivorship in Cancer Care.

As a disease, cancer can affect an individual's well-being, from physical to psychological, social, and even spiritual wellness. The cancer survivor population must navigate a complex, constantly evolving field, with the assistance of their care team, to conquer the disease. To address the unmet needs of the cancer survivorship community, NCCN conducted an environmental scan of existing and emerging aspects of survivorship cancer care through stakeholder meetings with survivors and patient advocacy groups to discuss needs, opportunities, and challenges in providing high-quality, patient-centered cancer survivorship care. The findings of this environmental scan directly informed the corresponding NCCN Patient Advocacy Summit: Addressing Survivorship in Cancer Care, held in Washington, DC, on December 1, 2017. In addition to the many patient advocacy groups, the summit featured stakeholders from all relevant areas of survivorship care. This article encapsulates the findings of the thorough environmental scan and the discussion from the NCCN Patient Advocacy Summit, including identified gaps and needs in addressing survivorship in cancer care.

Assessment of training and technical assistance needs of Colorectal Cancer Control Program Grantees in the U.S.

BACKGROUND: Practitioners often require training and technical assistance to build their capacity to select, adapt, and implement evidence-based interventions (EBIs). The CDC Colorectal Cancer Control Program (CRCCP) aims to promote CRC screening to increase population-level screening. This study identified the training and technical assistance (TA) needs and preferences for training related to the implementation of EBIs among CRCCP grantees. METHODS: Twenty-nine CRCCP grantees completed an online survey about their screening activities, training and technical assistance in 2012. They rated desire for training on various evidence-based strategies to increase cancer screening, evidence-based competencies, and program management topics. They also reported preferences for training formats and facilitators and barriers to trainings. RESULTS: Many CRCCP grantees expressed the need for training with regards to specific EBIs, especially system-level and provider-directed EBIs to promote CRC screening. Grantees rated these EBIs as more difficult to implement than client-oriented EBIs. Grantees also reported a moderate need for training regarding finding EBIs, assessing organizational capacity, implementing selected EBIs, and conducting process and outcome evaluations. Other desired training topics reported with higher frequency were partnership development and data collection/evaluation. Grantees preferred training formats that were interactive such as on-site trainings, webinars or expert consultants. CONCLUSIONS: Public health organizations need greater supports for adopting evidence-based interventions, working with organizational-level change, partnership development and data management. Future capacity building efforts for the adoption of EBIs should focus on systems or provider level interventions and key processes for health promotion and should be delivered in a variety of ways to assist local organizations in cancer prevention and control.