Advocates, Advisors, Guides and Navigators

Key Points

  • Advocates, advisors, guides and navigators can assist patients and caregivers in finding information about these topics:
    • Treatments
    • Therapies
    • Access to care
    • Financial issues
    • Social, emotional and logistical support
    • Other topics related to cancer care
  • Several levels of assistance are available, from family members with no training to trained volunteers, professional advocates and medical professionals. These levels vary greatly in regard to expertise and cost.
  • Few if any certificates or licensing standards are currently in place for these roles.
  • Navigators may be employed by  community groups, hospitals or insurance companies, or they may be volunteers, or they may be independent consultants.
  • Navigators are typically either nurses, social workers, cancer survivors or former caregivers.
  • Integrative navigators focus on assuring that patients have access to both conventional treatment and complementary therapies useful in addressing their physical, psychosocial and spiritual needs.

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.

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Michael Lerner

Patient-Centered Care

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.

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Navigators

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.

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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

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Integrative Oncology Navigation

Very few advocates, navigators or guides have competence in integrating mainstream and complementary cancer medicine.

Michael Lerner

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.

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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.

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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.”11

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Patient Advocates

“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.

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Medical (Clinical) Advocates

Rarely does this advocacy lead to confrontation [with the person's medical team] . . . it's about enhancing, expanding, and building bridges between people."

Mark Renneker12

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.

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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:

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View All References

More Information

Patient Advocacy Organizations with Navigation Services

Medical Advocacy

Integrative Oncology Navigation

 More from Our Resources Database

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