How NCCN Guidelines for Patients are Developed

The NCCN Guidelines for Patients^® are developed and frequently updated using a systematic process. We start by reviewing the most recent care recommendations made by our cancer experts. Evidence-based design and writing processes are used to educate and empower readers. Our process also includes stages of revisions that are based on feedback from cancer experts, advocates, and readers.

Trusted information

The care recommendations in the NCCN Guidelines for Patients come from the world-renowned NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines^®). The NCCN Guidelines^® are the tools used by health care providers worldwide to learn the best practices for cancer care.

Multidisciplinary panels of experts from leading cancer centers develop the NCCN Guidelines. The NCCN Guidelines Panels consist of clinicians, researchers, and advocates. They continuously update the NCCN Guidelines to include new clinical information.

NCCN openly shares how NCCN Guidelines are developed and has rigorous processes for transparency and management of potential conflicts of interest.

Clear information

The NCCN Guidelines for Patients are written and designed to clearly explain options for cancer care. The writers of the NCCN Guidelines for Patients are certified health literacy specialists. They’ve been trained to use longstanding, effective educational practices for health information.^1–7 Examples of these practices are:

Organizing information in a practical and logical order
Including useful headings
Writing in a concise, conversational style
Using a reader-friendly design
Creating helpful visuals

Readability is achieved using simple text and other health literacy strategies.⁸ Unfamiliar terms are sometimes included to aid communication between people and their health care providers. When included, unfamiliar terms are defined in the main text and in a glossary. Images are used to facilitate the learning of new information.

Empowering people

The NCCN Guidelines for Patients help empower people. When empowered, people take steps to improve their lives and often feel more satisfied with the results.

Because cancer affects everyone, the NCCN Guidelines for Patients are inclusive. Inclusion helps to reduce health disparities and achieve health equity. Examples of NCCN inclusive practices⁹ are:

Writing for lower reading levels
Focusing on anatomy instead of sex or gender
Choosing diverse images of people

Language in the NCCN Guidelines for Patients is respectful. People are more likely to advocate for themselves and receive better care when they are not blamed or stigmatized. Examples of respectful practices are:

Addressing patients as individuals first and not defining them by a disease
Not using words like “failure” or “failed” to describe poor treatment results
Not describing people as “smokers,” “addicts,” or “obese patients”

The NCCN Guidelines for Patients help people get the best care. Readers are encouraged to learn about and discuss NCCN recommendations with their health care providers. There are lists of questions to ask providers throughout the guidelines. These questions help readers learn about their options so that they can make informed and shared decisions with their care team.

Iterative revisions

The NCCN Guidelines for Patients are continuously improved. During development, they progress through several levels of editing. They also are refined and improved through multiple rounds of feedback because version updates frequently occur.

Many members of the NCCN Guidelines Panel ensure the health content is correct and appropriate. They also make insightful edits due to their work with patients. Advocates provide feedback from a patient’s perspective.

Readers provide feedback through an online survey on the published NCCN Guidelines for Patients. They rate the understandability, trustworthiness, and attractiveness of the guidelines. They also rate how helpful the guidelines were to them. Open-ended items are used to collect additional, detailed responses.

In addition to the survey, feedback from focus groups is used to improve organization, writing, and design.

We are grateful for our many supporters who have given feedback to improve the NCCN Guidelines for Patients.

References

Centers for Disease Control and Prevention (U.S.). Office of the Associate Director for Communication. CDC clear communication index : a tool for developing and assessing CDC public communication products : user guide. Accessed January 16, 2025. Available at: https://www.cdc.gov/ccindex/pdf/clear-communication-user-guide.pdf
Plain Language Action and Information Network. Federal plain language guidelines. Accessed January 16, 2025. Available at: https://www.plainlanguage.gov/media/FederalPLGuidelines.pdf
Centers for Disease Control and Prevention (U.S.). Office of Communication. Clear writing assessment and user guide. Accessed January 16, 2025. Available at: https://www.cdc.gov/nceh/clearwriting/docs/Clear_Writing_Assessment-508.pdf
Agency for Healthcare Research and Quality. The patient education materials assessment tool (PEMAT) and user’s guide. Accessed January 16, 2025. Available at: https://www.ahrq.gov/health-literacy/patient-education/pemat.html
Wizowski L, Harper T, Hutchings T. Writing Health Information for Patients and Families. 4th ed. Hamilton Health Sciences Corporation; 2014.
International Organization for Standardization. Plain language ― part 1: governing principles and guidelines (ISO 24495-1:2023). Accessed July 3, 2023. Available at: https://www.iso.org/standard/78907.html
Doak C, Doak L, Root J. Teaching Patients with Low Literacy Skills. 2nd ed. Lipincott; 1996.
Mac O, Ayre J, McCaffery K, Boroumand F, Bell K, Muscat DM. The readability study: a randomised trial of health information written at different grade reading levels. J Gen Intern Med. Published online December 20, 2024. doi:10.1007/s11606-024-09200-z
Freedman-Cass DA, Fischer T, Alpert AB, et al. The value and process of inclusion: using sensitive, respectful, and inclusive language and images in NCCN content. J Natl Compr Canc Netw. 2023;21(5):434-441. doi:10.6004/jnccn.2023.7025