Immediate and Free Access to NCCN Patient Guidelines: Interview with Dottie Shead
Dottie Shead, Senior Director of Patient Information Operations at NCCN, shares information about patient resources.
- What are the NCCN Guidelines for Patients®?
The NCCN Guidelines for Patients are an authoritative cancer resource available to anyone anywhere free of charge. The library of NCCN Guidelines for Patients includes disease specific treatment books, cancer prevention, and early detection, supportive care topics, and age-related books such as treating Adolescent and Young Adults with Cancer.
- How are the NCCN Guidelines for Patients created?
The NCCN Patient Information team consists of very bright, talented, and dedicated individuals who use health literacy and numeracy principles to develop the guidelines in an easy-to-understand format. This includes writing in plain language, adding images when words are not enough, reinforcing the information review sections, defining medical terms and acronyms and suggesting questions to ask your care team.
- How is the information in NCCN Guidelines for Patients different from what a patient could find searching the internet?
What sets the NCCN Guidelines for Patients apart from other resources is that they are the most reliable because they are based on the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®). The NCCN Guidelines® are considered the gold standard in cancer care, they are the most thorough and frequently updated clinical practice guidelines available. Both the clinical guidelines and the NCCN Guidelines for Patients have recommendations that are evidence-based/unbiased, developed and reviewed by a multidisciplinary panel of experts.
- How can a patient know this is reliable information?
This is a great question. I think everyone at one point has a family member or friend that is affected by cancer and wants to learn more. There is so much information available it is difficult to determine what you should read and then there are recommendations NOT to Google anything because you do not know what to trust. I always tell my friends or family to ask one question. Ask your oncologist or cancer care provider if they've ever heard of the NCCN Guidelines? The response should be all the reassurance you need to know that this information is 100% reliable.
- Is the information provided going to correspond with information used by oncologists?
Yes. In explaining to my sports- loving husband, I used the comparison of a playbook with a lot of x’s and o’s and play names that only the team and coaching staff understand. The NCCN Guidelines are the playbook your healthcare team utilizes when planning your care and deciding the best treatment options with the best outcomes. The NCCN Guidelines for Patients are a fan friendly version of the playbook. It puts patients and providers on the same page with the same information and ensures patients are aware of all of their treatment options and care choices, and allows patients to join the huddle and call the plays! Go Team!!!!
- Will this be easy to understand, especially for patients also juggling home and work? Why should patients and loved ones use the NCCN Guidelines for Patients?
The NCCN Guideline for Patients are easy to understand and are written in small sections in a step by step order from basic information to diagnosis, testing, side-effects, and survivorship. You can read it all at once, or scan the table of contents for specific topics. They are available for free download, able to view on your cell phone or mobile device via a free app, and printed copies are available for order on Amazon. There is also an email address that patients and caregivers can use to contact us at Patientinformation@nccn.org. Patients and/or caregivers can submit questions if they are having trouble finding information or would like to know more about the guidelines. (Allow 24-48 hours for a reply).
- How much do the Guidelines for Patients cost? How long will it take to get them?
The guidelines are available free for download or a high-quality print copy can be ordered via amazon.com for approximately $12. Always double check the NCCN Patient website first, there may be free copies available while supplies last. Downloading a guideline is instant and you do not need to register to the website, ordering a hard copy will take longer. I would estimate 7-10 business days but keep in mind printing and shipping do vary by location.
- Will I be able to find a Guideline for my cancer?
There are currently 65 books in the NCCN Guideline for Patients Library covering over 95% of all cancer incidences. New guidelines are being developed each year. It is our goal to have one for every disease type, supportive care, and age. Please do not hesitate to reach out if you have any questions or would like more information. We would be happy to assist you in anyway. (Patientinformation@nccn.org)