Cancer Advocates and Navigators

Guides in unfamiliar territory

The cancer experience is intricate, complex, nuanced, and varied. It can feel like a whole new world, complete with an unfamiliar language, to someone who is newly diagnosed. 

CancerChoices 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.”¹Lerner M. Choices In Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer. MIT Press. 1994. p xix. Having physicians and other professionals say, “Let me know if you have any questions” may not be enough, for you may not know enough to know what questions to ask.

Having guides who have the cancer equivalents of a map, a compass, and knowledge of the territory—plus compassion—can be very helpful. Even well after a diagnosis, guides can continue to provide much needed information and support.

Such guides come with various levels of training and experience and have titles such as medical advocate, navigator, or patient advocate.

Also see Making Skillful Decisions about Cancer Treatment ›

A family or friend caregiver often acts as a patient advocate or navigator. For caregivers who are not trained or experienced in this role, having additional support from someone who is trained and experienced can be very helpful.

See suggestions and links below for Finding a navigator or advocate ›

Medical or clinical advocates

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.

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 navigate and guide you in implementing individualized medical plans and strategies, while working collaboratively with your medical team.

“Rarely does this advocacy lead to confrontation [with the person’s medical team] . . . it’s about enhancing, expanding, and building bridges between people.”²Renneker M. No Stone Unturned: Medical Advocacy Techniques for People with Cancer and Other Serious Conditions. Healing Circles workshop presentation, Commonweal. June 5, 2015.

Medical advocates do not provide care, but instead work to “leave no stone unturned” in learning about and pursuing all possible diagnostic and treatment options. They may include experimental, conventional, and complementary medical strategies.

These advocates typically work by phone, consulting with patients from across the country and around the world.

The field of medical or clinical advocacy was founded by Mark Renneker, MD. Commonweal, the parent organization of CancerChoices, has worked closely with him for many years. He describes medical advocates as doing for a patient what any physician would do if a serious illness hit close to home. His philosophy and approach is described in his seminal article, No Stone Unturned: Medical Advocacy Techniques for People with Cancer and Other Serious Conditions.

Dr. Robert Nagourney, creator of a personal cancer testing technique called functional profiling, points out that medical advocates can also help a person sort through and assess published research results. In a blog post, Nagourney cautions that sometimes problems compromise the objectivity and accuracy of study reports published in peer-reviewed articles. He goes on to suggest that patients consider seeking “the assistance and input of one of a growing number of medical advocates.”³Nagourney RA. Cancer patients want to win, but is the playing field level? Updated October 25, 2021. Viewed January 28, 2022.

Medical advocacy is not a medical specialty, and no certification or licensing exists for medical advocates.

Patient advocates

Patient advocates provide several types of support:⁴With gratitude to Betsy Glosik, chair of the patient advocates special interest group of the Society for Integrative Oncology 

• Patient navigation throughout treatment and beyond within the conventional medical system, as well as outside the system for integrative and complementary care
• Financial and legal navigation, particularly for end-of-life matters for people with cancer 
• Educating people with cancer and caregivers on research and decision making. Research can involve everything from gaining an understanding about treatments and side effects to learning about other possible treatment options, clinical trials, and therapies that may improve quality of life and outcomes.

A patient advocate may also intervene if requested to represent people who think their healthcare rights are being violated. Their advocacy may be specific to a disease and/or function, such as palliative care with cancer or insurance/financial issues related to cancer. 

Oncology patient advocates are often cancer survivors. They are not necessarily trained in a healthcare profession, although they may have professional training as a health advocate. Advocates who are cancer survivors may bring a unique and valuable perspective and understanding to their services.

Patient advocate certification and licensing

Navigators

Oncology navigation

Oncology navigation was originally created by surgeon Dr. Harold Freeman who founded The Harold P. Freeman Patient Navigation Institute to reduce disparities in access to diagnosis and treatment of cancer, particularly among poor and uninsured people.⁵The Harold P. Freeman Patient Navigation Institute. About Us. Viewed February 1, 2022 His work showed that the availability and use of both community health workers and patient navigators improved breast, cervical, and colorectal cancer screening completion and timeliness and/or referral for diagnostic resolution at federally qualified health centers.⁶Roland KB, Milliken EL et al. Use of community health workers and patient navigators to improve cancer outcomes among patients served by federally qualified health centers: a systematic literature review. Health Equity. 2017 May 1;1(1):61-76.

As a result of this work, The American College of Surgeons Commission on Cancer now requires its certified cancer centers to provide navigation services. Someone providing navigation services may or may not formally be called a navigator, though the title of navigator is becoming more common in cancer centers. To access these services, we recommend you ask for a nurse, social worker, or other person who can help coordinate your care and help you deal with barriers to receiving and completing your care.

Oncology navigators serve several roles.

1. Navigators help patients overcome healthcare system barriers, such as a lack of clarity about treatment options, a lack of transportation or social support, insurance or financial issues and problems communicating with healthcare professionals. 
2. Navigators provide timely access to quality medical and psychosocial care. Services can start before cancer diagnosis and continue through all phases of cancer.

They play an important role in reducing healthcare disparities. Also see Affordability and Access to Care ›

Navigators may come from various backgrounds and experience with cancer:

• Oncology nurses
• Oncology social workers
• Patient (peer) navigators who are not clinically licensed

Navigators can be employed by community groups, hospitals, or insurance companies. They may also be volunteers, or independent consultants hired by people with cancer or their families.⁷Patient Navigators Can Help When Life Disrupts Cancer Care. American Cancer Society. April 19, 2021. Viewed January 28, 2022.

Why use an oncology navigator?

Oncology navigation “provides strong support to the patients when experiencing disruption from cancer diagnosis and treatment.”⁸Tan CH, Wilson S, McConigley R. Experiences of cancer patients in a patient navigation program: a qualitative systematic review. JBI Database of Systematic Reviews and Implementation Reports. 2015 Mar 12;13(2):136-68. Benefits to patients:⁹Tan CH, Wilson S, McConigley R. Experiences of cancer patients in a patient navigation program: a qualitative systematic review. JBI Database of Systematic Reviews and Implementation Reports. 2015 Mar 12;13(2):136-68; Tho PC, Ang E. The effectiveness of patient navigation programs for adult cancer patients undergoing treatment: a systematic review. JBI Database of Systematic Reviews and Implementation Reports. 2016 Feb;14(2):295-321; Wagner EH, Ludman EJ et al. Nurse navigators in early cancer care: a randomized, controlled trial. Journal of Clinical Oncology.] 2014 Jan 1;32(1):12-8.

We perceive that, as health care becomes more patient-centered, cancer survivors who are more involved in their care and decision-making have a better experience and satisfaction with care.

Integrative oncology navigation

Integrative oncology navigation is a patient-centered, whole-person healthcare delivery model that expands upon the original patient navigation model.

Distinct from more conventional 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.

Trained integrative navigators are well versed in the array of complementary therapies and approaches most commonly used in cancer care and skilled in assisting you in researching, responsibly selecting, and using these therapies. They emphasize the importance of communication and coordination with your medical team.

Integrative oncology navigators serve as educators, advocates, and compassionate guides with these goals:

• Reduce barriers to accessing cancer care and completing treatment
• Guide you to select appropriate, evidence-informed complementary approaches to use alongside conventional medical treatment
• Facilitate access to complementary therapies by directly teaching you about them and/or connecting you with resources that support emotional, spiritual, and physical healing
• Maintain a consistent presence by coordinating care and providing seamless support throughout the entire cancer experience
• Offer a refuge by providing compassionate, sensitive support to you and your loved ones

Other professionals such as integrative health coaches, cancer guides and patient advocates perform similar roles but may not have the specific focus or specialized training of integrative navigators.

Why use an integrative navigator?

Integrative navigation services have been found to support people with cancer to reduce their cancer-related concerns and stress levels and increase knowledge and confidence. These outcomes led to making better, more informed choices. People felt heard and supported, resulting in improved levels of patient satisfaction. People also had higher commitment to self care and practiced it and used supportive therapies more. They reported improvements in symptoms and concerns, leading to better outcomes overall.¹⁰Institute for Integrative Oncology Navigation. Survey of Integrative Oncology Navigation Training Alumni, 2009-2012. Smith Center for Healing and the Arts. May 2013; Chatman MC, Green RD. Addressing the unique psychosocial barriers to breast cancer treatment experienced by African-American women through integrative navigation. Journal of the National Black Nurses’ Association. 2011 Dec;22(2):20-8.

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.

Navigator certification and licensing

The Academy of Oncology Nurse and Patient Navigators (AONN) offers certification in traditional oncology navigation. Certification indicates that a nurse or patient navigator has the basic knowledge to carry out their roles and responsibilities as navigators.

No state board licensing of navigators is yet available, and neither licensure nor certification is required for practicing advocacy or navigation. Nurse and social worker navigators and physician medical advocates are typically licensed in their professions. The field of integrative oncology navigation is relatively new, and no certification or licensure is available for integrative oncology navigators.

Finding a navigator or advocate

When searching for a navigator or advocate, we encourage you to ask about costs for services and whether your insurance will cover charges.

Suggestions for finding a navigator or advocate:

• Ask your doctor if his/her practice has a navigator, advocate, and/or social worker.
• Ask if your cancer center has a navigator, advocate, social worker, and/or ombudsman.
• Search the options below.

Finding an oncology navigator

Finding an integrative oncology navigator

Finding an advocate

Finding a cancer coach

Helpful links

Become a navigator

Are you a health professional?

Navigator training

The Institute for Integrative Oncology Navigation (IION), within Smith Center for Healing and the Arts, currently offers the only national professional training for integrative oncology navigators. To date IION has trained more than 130 navigators from around the US. Graduates include oncology nurses, social workers, physicians, integrative practitioners, and cancer survivors. An online version of this training has been created with Maryland University for Integrative Health (MUIH).

Helpful link for professionals

Keep reading about how to integrate your choices