Advocates, Advisors, Guides and Navigators
Surviving—and even thriving—with a cancer diagnosis is a real challenge. Some people have the skills and aptitude to be their own advocates, their own advisors, their own guides and their own navigators. Others are wise enough to know that—even if you think you know everything you need to know—it helps to have help. That’s what advocates, advisors, guides or navigators provide. Sometimes they are family members or close friends. Sometimes they are your oncologist or primary practitioner. Sometimes you have different advisors on different topics. And sometimes you are able to find a professional that you can afford to do particular parts of this work with you. This section provides some background for finding the counsel you need. Please note that the different kinds of cancer guides, navigators and advocates assembled here have very different levels of expertise.
BCCT co-founder Michael Lerner believes that “the experience of a person who is given a cancer diagnosis is similar to that of a soldier who is given orders by his officers to parachute into a jungle war zone without a map, a compass, or training of any kind. . . Physicians often assume that the patient needs to know nothing except how to follow medical advice.”1 As healthcare becomes more person-centered, we keep in mind that cancer survivors who are more involved in their care and decision-making have a better experience and satisfaction with care.
Traditional Oncology Navigation
Dr. Harold P. Freeman
Oncology navigation was originally created by surgeon Dr. Harold Freeman. Among many other accomplishments, Dr. Freeman was founding director of the National Cancer Institute Center to Reduce Cancer Health Disparities, founded the Ralph Lauren Center for Cancer Care and Prevention in New York City, and serves as senior advisor to the director of the National Cancer Institute.
Traditional navigation is defined as “helping patients overcome health care system barriers and providing them with timely access to quality medical and psychosocial care from before cancer diagnosis through all phases of their cancer experience.”3 Navigators can be employed by community groups, hospitals or insurance companies. They may be paid by those organizations, they may be volunteers, or they may be independent consultants hired by people who want help managing their complex medical needs.4
Very few advocates, navigators or guides have competence in integrating mainstream and complementary cancer medicine.
Types of Navigators
Nurse navigators, patient or non-clinically licensed navigators, oncology social workers and lay navigators each have different backgrounds and training. Some are licensed.
Integrative oncology navigation is a patient-centered, whole-person healthcare delivery model that expands upon the original patient navigation model conceived by Dr. Harold Freeman.
Distinct from more traditional patient navigators, integrative navigators focus on assuring that you have access to both conventional treatment and complementary therapies useful in addressing your physical, psychosocial and spiritual needs.
Training and Certification of Navigators
According to the American Cancer Society: “So far, the patient navigator profession is not regulated. While many organizations offer certificates, there are no state or national credentials or licenses. However, this may be changing. The Patient Advocate Certification Board is in the process of developing a nationally recognized set of credentials.”12
“Patient advocate” can denote a number of different roles and positions, such as a patient advocate in a hospital who may help cut through red tape or who advocates for patients who think their healthcare rights are being violated.
Oncology patient advocates are often cancer survivors not necessarily trained in a healthcare profession, although they may have professional training as a health advocate. Advocates who are cancer survivors bring a unique and valuable perspective and understanding to their services.
Rarely does this advocacy lead to confrontation [with the person's medical team] . . . it's about enhancing, expanding, and building bridges between people."
Medical advocates, sometimes called clinical advocates, are trained healthcare professionals, primarily physicians, who specialize in working with patients and families who are facing complex medical situations.
- Medical advocates typically work with people who may not be getting all the medical help, information or treatments they need.
- They do not provide care, but instead help “leave no stone unturned” in learning about and pursuing all possible diagnostic and treatment options, including experimental, mainstream, alternative and integrative medical strategies.
- A medical advocate works as a personal consultant, researcher and advocate to help you get the information and authority you need to be in charge of your health care.
- They seek to work collaboratively with your medical team.
- They navigate and guide you in implementing individualized medical strategies.
- These advocates typically work by phone, consulting with patients from across the country and around the world.
Finding a Navigator or Advocate
Even if you have a top-notch oncology care team and plenty of resources, you may find benefit from having a navigator guide you through cancer treatment and survivorship care. Suggestions for finding a navigator or advocate:
Patient Advocacy Organizations with Navigation Services
- American Cancer Society
- Blueprints of Hope
- Cancer Navigators of Rome (Georgia)
- Livestrong Navigation
- National Association of Healthcare Advocacy Consultants
- Native American Cancer Research Corporation
- Patient Advocate Foundation
- Susan G. Komen Breast Cancer Helpline
- The New School at Commonweal: Medical Advocacy for People with Cancer and Other Serious Conditions
- Renneker M. No Stone Unturned: Medical Advocacy Techniques for People with Cancer and Other Serious Conditions. Healing Circles workshop presentation, Commonweal. June 5, 2015.
Integrative Oncology Navigation
More from Our Resources Database
- BCCT: Navigating BCCT by Stages on the Cancer Path
- The New School at Commonweal and Healing Circles: Mark Renneker, MD: Medical Advocacy for Cancer Patients, Part 2
- The New School at Commonweal and Healing Circles: Mark Renneker, MD: Medical Advocacy for Cancer Patients, Part 1
Enter your comments or questions below.
Have you looked at our Multiple Myeloma page? https://bcct.ngo/cancers-and-symptoms/cancers/multiple-myeloma We don't have a lot of information yet about integrative approaches, but we do post links to information from the National Cancer Institute and CancerNet about conventional treatments, plus clinical practice guidelines from the National Comprehensive Cancer Network and the American Society of Clinical Oncology. You'll also find links to two integrative protocols from sources we have vetted. We hope these resources will give you a good foundation to discuss with your oncologist.
Please let us know how your research progresses.
Hello. I'd like more suggestions on help with assisting my treatment for Myloma.
Thank you Erich