Risk Assessment And Screening Toolkit To Detect Familial, Hereditary And Early Onset Colorectal Cancer

Limited or inaccurate family history collection and risk assessment is a major barrier to successful cancer screening. Individuals who have a first-degree relative with colorectal cancer (CRC) are at least two times more likely to develop CRC, with the risk increasing with earlier ages of diagnosis and the number of relatives diagnosed with CRC. Therefore, screening and prevention efforts must focus on those with familial or hereditary risk, which requires collecting the necessary family history information for risk assessment. Primary care clinicians play a pivotal role in identifying people at increased CRC risk and facilitating recommended screening.

This new NCCRT toolkit aims to improve the ability of primary care clinicians to systematically collect, document, and act on a family history of CRC and adenomas polyps, while also educating clinicians on the need for more timely diagnostic testing for young adults who present with alarm signs or symptoms of CRC and ensuring that those patients receive a proper diagnostic work up. This toolkit serves as a comprehensive, step-by-step guide to improve operations within practices and suggests many useful resources and tools to aid these changes. 

Companion Quick Start Guide

Accompanying the full toolkit is a short, quick start guide with recommendations on how to ease into the transition process, while still making the critical improvements necessary for successful system-wide implementation. 

Thank you to the outstanding work and guidance provided from the NCCRT Family History and Early Age Onset Colorectal Cancer Task Group and the smaller project advisory group. Also, thank you to the excellent work from our project developers at The Jackson Laboratory. 


Guide to the Development of State-Level Colorectal Cancer Coalitions

This guide provides partners with a framework for the development of state-based coalitions focused on colorectal cancer control. The shared 80% colorectal cancer screening goal requires a coordinated approach from various stakeholders committed to the implementation of strategic interventions at state level. This guide highlights lessons learned from five states that have effective, well established collaborations that focus on increasing colorectal cancer screening rates. 

The states highlighted were chosen in consultation with members of the Comprehensive Cancer Control National Partners. While other high performing states could have also been highlighted, these five were chosen because they offer a range of models, funding levels, and diverse approaches. States include: California, Delaware, Kentucky, Minnesota and South Carolina.

The guide is organized around ten recommended tasks that statewide collaborations can consider when seeking to develop a plan of action to advance colorectal cancer control efforts.

Executive Summary and Workbook

The companion workbook provides partners with an abbreviated, yet action-oriented, outline for the development of state-based coalitions focused on colorectal cancer control. This executive summary and workbook complements the expansive findings in the NCCRT’s Guide to the Development of State-Level Colorectal Cancer Coalitions by providing brainstorming prompts, checklists, and frameworks to best prepare you for the rewarding coalition work that awaits.

Each task worksheet linked below is formatted as an interactive PDF and available for individual download to better meet your planning needs. 

1. Prioritize colorectal cancer in their state (Task 1 Worksheet)
2. Establish a structure (Task 2 Worksheet)
3. Develop a vision (Task 3 Worksheet)
4. Recruit leadership and staff (Task 4 Worksheet)
5. Build a network of partners (Task 5 Worksheet)
6. Convene partners (Task 6 Worksheet)
7. Set goals (Task 7 Worksheet)
8. Maintain momentum (Task 8 Worksheet)
9. Get creative with funding and resources (Task 9 Worksheet)
10. Hold the group accountable (Task 10 Worksheet)


evaluation toolkit

“The 7-step process is helpful. It is a guide/outline that can be used to ensure that you have developed a great program and the ability to evaluate the effectiveness of your program.”

Evaluation Toolkit, Version 4:

How to Evaluate Activities to Increase CRC Screening and Awareness: Evaluation Toolkit – Now With Case Studies That Include Policy and Systems Change!

This latest version of the evaluation toolkit is intended to help organizations and communities evaluate a wide variety of interventions designed to increase awareness and use of colorectal cancer screening. The toolkit will help you learn the seven basic steps to evaluation, whether you are working to increase community demand for colorectal cancer screening, encouraging health care providers to recommend screenings, or trying to implement policy, systems, or environmental (PSE) changes.This toolkit will provide you with:

  • A basic understanding of evaluation strategies.
  • Tools that you can use and adapt to assess baseline screening rates, or the effectiveness or impact of the intervention.
  • Basic skills to collect outcome data to inform and improve decision-making.
  • Tips for incorporating evaluation results into grant proposals, reports, and other dissemination activities.
  • Practical yet comprehensive evaluation references and resources.

Download this comprehensive resource.

Evaluation Tip Sheets – designed to give you a quick overview of the evaluation process.

Click here to download four separate Evaluation 101 learning modules.  These four pre-recorded webinars are designed to walk you through the evaluation process in greater depth.

New! Guidance on Evaluation 80% by 2018 Messaging

best practices handbook for health plans

“Thank you! This is exactly the type of information health plans need to pass to one another to improve partnership/collaboration, as the consumer will benefit at the end.”

“I really enjoyed that each of the health plans featured in the toolkit highlights a different intervention or opportunity. That gives our partners many approaches to choose from.”

Colorectal Cancer Screening Best Practices Handbook for Health Plans

Health plans have an essential role to play in the effort to screen more Americans for colorectal cancer, particularly given that seven out of 10 people who are unscreened are covered by insurance.

Colorectal Cancer Screening Best Practices Handbook for Health Plans, provides a first-of-its-kind compilation of best practices, case studies, templates and tools, that will kick start or infuse health plans’ efforts to save more lives and prevent more cancers.

To develop the handbook, the NCCRT convened an advisory group of health plan experts and interviewed high-performing health plans to understand what works and what doesn’t when it comes to increasing screening among members. Thank you to the many individuals and organizations who contributed their time and expertise to developing this much requested resource.

In the future, we hope to update this handbook with more case studies from high-performing health plans. If you have a story to share about how your health plan has worked to raise colorectal cancer screening rates, please email nccrt@cancer.org.

NCCRT’s issue brief, The Importance of Waiving Cost-sharing for Follow-up Colonoscopies, provides additional information on the colonoscopy copay issue.

View the March 28, 2017 webinar introducing the Handbook for a guided tour of the best practices, case studies, and templates and tools found within the handbook, and hear from one of the profiled health plans.

80% by 2018 Communications Guidebook: Recommended Messaging to Reach the Unscreened

This Guidebook is based on market research from the American Cancer Society with guidance from the NCCRT Public Awareness Task Group. The Guidebook is designed to help educate, empower and mobilize three key audiences who are not getting screened for colorectal cancer:

  • The newly insured
  • The insured, procrastinator/rationalizer
  • The financially challenged

The goal of the Guidebook is to share what we know about reaching these hard-to-persuade groups using tested messages.

The 2017 Guidebook includes additional templates, tools and customized resources. (Note: Some versions of Internet Explorer create errors in the document. If you experience problems please use an alternate browser, such as Firefox or Google Chrome.)

The Hispanics/Latinos and Colorectal Cancer Companion Guide and Asian Americans and Colorectal Cancer Companion Guide introduce market research about the unscreened from these populations and include tested messages in Spanish and several Asian languages.

Use the following tools to help you promote and evaluate 80% by 2018 communications:

The Guidebook reviews what we know from market research about the unscreened and introduces and explains new tested messages. It also provides tools with the messages incorporated to get you started:

Our hope is that partners can take this research and messages provided in the Guidebook and make the message resonate with the target audiences even more by using their own creativity, innovation and spokespersons.

View the following webinars to learn more about the market research that went into this work, and the tools that are available.

Asian Americans and Colorectal Cancer Companion Guide

The Asian Americans and Colorectal Cancer Companion Guide is a supplement to the 80% by 2018 Communications Guidebook, created in 2015 and updated in February 2017. This Companion Guide, based on both qualitative and quantitative research, seeks to provide advice about how to communicate about colorectal cancer screening with seven Asian American subgroups. The Companion Guide includes:

  • Perceptions about colorectal cancer and barriers to screening among unscreened Asian Americans
  • Recommendations for reaching unscreened Asian Americans
  • Tested messages in several Asian languages

Visit the the 80% by 2018 Communications Guidebook to find additional tools and resources to help you promote and evaluate your communications. Find additional guidance on communications for Hispanics/Latinos in the Hispanics/Latinos and Colorectal Cancer Companion Guide.

View the February 9th, 2017 webinar introducing the Asian Americans Companion Guide and new communications tools.

Guidance on Evaluating 80% by 2018 Messaging

Guidance for Evaluating the Effectiveness and Impact of 80% by 2018 Communications Efforts

This resource provides evaluation guidance for organizations that have adapted the tested messaging and other recommendations presented in the 80% by 2018 Communications Guidebook in their educational and communications efforts. While the messages and recommendations were based on market research, it is important that partners evaluate their own use of the messages to ensure that the messages and delivery channels are having the expected impact and to adapt their strategies if necessary.

Hispanics/Latinos and Colorectal Cancer Companion Guide

The Hispanics/Latinos and Colorectal Cancer Companion Guide is a supplement to the 80% by 2018 Communications Guidebook, created in 2015 and updated in February 2016. This Companion Guide is based on market research on Hispanics/Latinos that are not up-to-date with recommended colorectal cancer screening. The Companion Guide includes:

  • Perceptions about colorectal cancer and barriers to screening among unscreened Hispanics/Latinos
  • Recommendations for reaching unscreened Hispanics/Latinos
  • Spanish language tested messages

The Companion Guide reviews what we know from market research about unscreened Hispanics/Latinos and introduces and explains new tested messages.

New materials that utilize the messaging are now available for all to use.  Partners are invited to use these materials below as is OR cobrand these materials in partnership with the NCCRT and the American Cancer Society.

To cobrand the materials, please fill out the responsible use agreement. You will then be sent the original files with a button allowing you to upload your logo to cobrand the materials.

Our hope is that partners can take this research and messages provided and make the messages resonate with their target audiences even more by using their own creativity, innovation and spokespersons.

Visit the the 80% by 2018 Communications Guidebook to find additional tools and resources to help you promote and evaluate your communications. Find additional guidance on communications for Asian Americans in the Asian Americans and Colorectal Cancer Companion Guide.

View the February 9th, 2016 webinar introducing the Companion Guide.

FluFIT Program

FluFIT programs increase colorectal cancer screening rates by providing a take home fecal immunochemical test (FIT) to eligible patients when they receive their annual flu shot. Thus, the annual flu shot campaign create an opportunity to reach people who are also due for colorectal screening.

The FluFIT website offers program planning and implementational materials, including staff training, work flows, log sheets, sample reminder letters, and sample telephone call scripts. The site also provides patient educational materials, such as clinic posters, and FIT instructions (both printed materials and videos) in several languages. These materials can help prepare a healthcare team to develop the simple systems needed to implement a FluFIT program and jump start program development.

FluFIT programs have been implemented successfully in a variety of clinical settings. Many FluFIT campaigns are run by nurses, pharmacists, or medical assistants. They can be implemented and sustained with limited resources, are well accepted by patients, and can lead to higher screening rates.

Evaluation: FluFIT is a research-tested program. Visit the Publications section of the website to find research articles and reviews of the FluFIT approach.

Evaluation Assets: The Program Materials section of the website includes a sample FluFIT log sheet and sample FluFIT results tracking sheet.

Permissions: Made publicly available online by the Department of Family and Community Medicine, University of California.

Publication date: 2009; updated in 2017

Post date: September 15, 2017

Contact: Send comments, questions, and suggestions to Michael Potter, MD at potterm@fcm.ucsf.edu.

New Hampshire Colorectal Cancer Screening Program Patient Navigation Model Replication Manual

The New Hampshire Colorectal Cancer Screening Program (NHCRCSP) patient navigation model has been highly effective in increasing the completion and quality of colonoscopy screening and surveillance among statewide underserved groups. Patients in this program, all of whom were navigated, were 11 times more likely to complete colonoscopy than non-navigated patients in a comparison group. Given this success, the Centers for Disease Control and Prevention (CDC) and the NHCRCSP worked together to develop a manual to help others replicate the model. The manual includes step-by-step instructions for implementing a screening navigation program, including a detailed navigation protocol, guidance on data collection, navigator training, and sample templates and tools.

Intended Audiences: Any organization that conducts colorectal cancer screening or administers a colonoscopy program may benefit from implementing this intervention. Organizations could include health systems, endoscopy centers, primary care practices (including Federally Qualified Health Centers), universities, state or local health departments, and grantee programs. This manual also may be useful for health care providers, pharmacy staff, and other community partners to clarify their roles in the intervention and how it benefits their patients.

Congratulations to former NCCRT Steering Committee member Dr. Lynn Butterly and to all the others who helped create this resource.

Evaluation: A rigorous evaluation was conducted, including a comparison of NHCRCSP-navigated patients to a similar group of non-navigated patients. Learn more on page 8 and in Appendix D. Evaluation results were also published in the journal Cancer.

Permissions: Made publicly available online through the Centers for Disease Control and Prevention.

Publication date: October 2016

Post date: September 18, 2017

Contact: Send comments, questions, and suggestions to NHPNManual@cdc.gov or NHCRCSP@hitchcock.org.