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.
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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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It is especially noteworthy that very few advocates, navigators or guides have competence in integrating mainstream and complementary cancer medicine. The exceptions include those trained by Mark Renneker in medical advocacy and those trained in integrative oncology navigation with Laura Pole and Carole O’Toole. Full disclosure: I work closely with both Mark and Laura, and Laura is the lead researcher for BCCT. Please see more about this work and these individuals in the Integrative Oncology Navigation and the Medical (Clinical) Advocates sections below.
That said, there are many integrative practitioners—as differentiated from advocates, navigators and guides—who have a healthy respect for what mainstream cancer care can accomplish and sophisticated approaches to integrating mainstream and integrative care. For example, practitioners who have completed training in naturopathic oncology are often well qualified on mainstream care. Many others have this competence as well.
Good luck finding what you need!
Michael Lerner
Patient-Centered Care
Highlighted Video
Mark Renneker, MD, describes the services a medical advocate provides for a patient.
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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.” 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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Going through the cancer experience is quite intricate, complex, nuanced and varied. Having guides who show up with a map, a compass, compassion and knowledge of the territory can be very helpful. These guides come with various levels of training and experience and have titles such as “medical advocates”, “navigators” or “patient advocates.” Some of these guides are cancer survivors themselves, bringing this valuable perspective to their service. Sometimes these survivor guides are called peer navigators or peer advocates. We present the various types of oncology advocacy and navigation services so you can explore options for bringing a guide onto your cancer care team.
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.
Read more For many years, Dr. Freeman cared for primarily disadvantaged African Americans in Harlem experiencing such extreme barriers to care that they were not completing or sometimes even initiating their treatments. He founded The Harold P. Freeman Patient Navigation Institute when he initiated and developed the first patient navigation program in Harlem to reduce disparities in access to diagnosis and treatment of cancer, particularly among poor and uninsured people. |
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.” 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.
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Evidence shows that oncology navigation “provides strong support to the patients when experiencing disruption from cancer diagnosis and treatment.” Benefits to patients have included these:
- Increased accessibility to care
- Emotional support
- Increased knowledge and empowerment regarding treatment goals and plans
- Increased patient satisfaction
- Practical assistance to ensure continuity of care
Largely due to positive results, many cancer centers have begun providing navigation services. The American College of Surgeons Commission on Cancer now requires its certified cancer centers to provide navigation services. The standard does not specify who should provide these services nor the level of training required. Different service models have developed regarding who serves as navigators:
- Oncology nurses
- Oncology social workers
- Both nurses and social workers
- Patient (peer) navigators who are not clinically licensed
The person providing these services may or may not be formally called a navigator, though the title of navigator is becoming more common in cancer centers. Some centers may even have several navigators, usually specializing in navigating people with a certain type of cancer, such as breast cancer navigators, or in certain phases of the cancer experience, such as survivorship navigators. In addition to being based at cancer centers, navigators may freelance in the community.
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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Nurse Navigator
The Academy of Oncology Nurse & Patient Navigators (AONN) describes a nurse navigator: “A clinically trained individual responsible to identify and address barriers to timely and appropriate cancer treatment. They guide the patient through the cancer care continuum from diagnosis through survivorship. More specifically, the nurse navigator acts as a central point of contact for a patient and coordinates all components involved in cancer care including surgical, medical, and radiation oncologists; social workers; patient education; community support; financial and insurance assistance; etc. This person has the clinical background and is a critical member of the multidisciplinary cancer team.”
Patient or Non-clinically Licensed Navigator
AONN describes a patient navigator: “An individual who does not have or use clinical training to provide individualized assistance to patients and families affected by cancer to improve access to health care services.
"A patient navigator may work within the healthcare system at point of screening, diagnosis, treatment or survivorship or across the cancer care spectrum or outside the health care system at a community-based organization or as a freelance patient navigator. The patient navigator, unlike a ‘lay’ navigator is a paid professional and serves as a broker between the patient and the health care system.
“The patient navigator is a primary point of contact for the patient and works with other members of the care team to coordinate care for the patient. This critical person on the multidisciplinary team provides important perspective on logistical, structural and social needs of the patient as well as cultural considerations, patient values and care preferences.
"In general, a patient navigator provides assistance with identifying challenges to cancer care, identifying potential solutions with patients and families, identifying financial assistance to address patient needs, helping patients identify priority questions about their care, helping patients use time effectively with clinical providers and working with social work and nurse navigator colleagues to provide psychosocial and community support.
A social worker or nurse may perform the role of a patient navigator, but in this instance they should discuss their scope of practice with their supervisor to ensure they perform duties within their hired role as opposed to within their clinical training.”
Oncology Social Worker
Iris Cohen Fineberg explains the work of an oncology social worker: “The role of the oncology social worker is to help patients, families, and caregivers deal with the experience of facing cancer.
Social workers are educated and skilled to assist with the psychological, social, emotional and spiritual issues that people have to deal with in oncology. Social workers are there to help people with practical needs, like finding resources in the institution and the community, and with such complex needs such as adjusting to an illness, dealing with transitions and decision-making, navigating cultural issues, and communicating with family members, friends, and healthcare providers.
Social workers meet with patients and family members individually and/or as a family, run support and education groups, and work as part of oncology care teams.”
Lay Navigators
Lay navigators come to the profession without a medical background and are trained by organizations like the American Cancer Society in collaboration with a partner hospital in their community. More than 100 American Cancer Society patient navigators are located across the US in a variety of publicly and privately funded institutions.
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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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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 responsibly select appropriate, evidence-informed complementary approaches alongside conventional medical treatment
- Facilitate access to integrative therapies by teaching integrative techniques and 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 you loved ones.
Benefits of Using an Integrative Navigator
In a survey of training alumni of the Smith Center for Healing and the Arts, integrative navigators and their patients have reported that through integrative navigation services, patients have been able to reduce their cancer-related concerns, reduce stress levels, and increase their knowledge and confidence, resulting in improvements in making informed choices. Patients also increased their commitment to and practice of self-care. They felt heard and supported, resulting in improved levels of patient satisfaction, and—with an increase in use of supportive therapies—they reported improvements in symptoms and concerns, leading to better outcomes overall.
The availability and use of both community health workers and patient navigators improved completion and timeliness of breast, cervical, and colorectal cancer screening and/or referral for diagnostic resolution at federally qualified health centers.
How to Find an Integrative Navigator
The Institute for Integrative Oncology Navigation (IION), within Smith Center for Healing and the Arts, currently offers the only national professional training for integrative 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.
Other professionals such as integrative health coaches, cancer guides and patient advocates perform similar roles as integrative navigators but may not have the specific focus or specialized training that integrative navigators have.
To find an integrative navigator in your area, you may wish to contact IION to assist you from their roster of graduates: Integrative Patient Navigation.
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.”
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The Academy of Oncology Nurse and Patient Navigators (AONN) now offers certification in traditional oncology navigation indicating that the nurse or patient navigator has the basic knowledge to carry out their roles and responsibilities as navigators. AONN’s certification exams are in the accreditation process from the National Commission for Certifying Agencies (NCCA). For more information on certification as well as cancer centers or advocacy organizations who support AONN certification, see the AONN website: Certification.
No state board licensing of navigators is yet available, and neither licensure nor certification is a federal or state requirement for practicing advocacy or navigation. Typically, nurse and social worker navigators and physician medical advocates are licensed in their professions. The field of integrative oncology navigation is relatively new; currently no certification or licensure process is available for integrative oncology navigators.
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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Though a common public perception of advocates is that they are primarily involved in general public health matters, the reality is that most deal very closely with individuals; their advocacy may be specific to disease and/or function, such as cancer and palliative care, or cancer and insurance/financial issues. In addition to advocating for individual patients, many also work to advocate for cancer research and improved healthcare policy.
According to Betsy Glosik, chair of the patient advocates special interest group of the Society for Integrative Oncology, patient advocates provide these services:
- Patient navigation throughout treatment and beyond within the traditional medical system, as well as outside the system for integrative and complementary care
- Financial and legal navigation, particularly for end-of-life matters, acting as caregiver for patients
- Educating patients, caregivers and survivors on research and decision making.
Certification of general patient advocates is available; see the Patient Advocate Certification Board. No state board licensing of advocates is available, and neither licensure nor certification is a federal or state requirement for practicing advocacy.
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 Renneker
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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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 his blog post, Cancer patients want to win, but is the playing field level?, 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."
Medical advocacy is not a medical specialty, and no certification or licensing exists for medical advocates. However, medical advocate Mark Renneker, MD, in collaboration with Commonweal, has developed a training program of medical advocacy fellows. The first class graduated in Winter 2018.
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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- Ask your doctor if his/her practice has navigators and/or advocates.
- Ask if your cancer center has navigators and/or advocates.
- Search the internet for local/state oncology navigator groups and networks. Several Academy of Oncology Nurse & Patient Navigators® (AONN) local navigation networks exist in the US and internationally. To see these networks, visit the AONN website: Existing Local Navigator Networks
- For a list of cancer centers and advocacy organizations that support and recognize AONN certification (and therefore may be likely to employ certified navigators), see Certification webpage.
- The Society for Integrative Oncology has a directory of its members, sorted by practice. The Patient Advocate listings include both advocates and navigators. Public Directory: In the box labeled “Primary Profession”, select the “Patient Advocate” option, then complete the rest of the information.
- Call the American Cancer Society at 1-800-227-2345 to find any American Cancer Society patient navigator programs in your area.
- To find an integrative oncology navigator: you may wish to contact the Institute for Integrative Oncology Navigation (IION) to assist you from their roster of graduates: Patient Navigation Training In Integrative Cancer Care
- To find a patient advocate:
- Lerner M. Choices In Healing: Integrating The Best of Conventional and Complementary Approaches to Cancer. MIT Press. 1994. p xix.
- The Harold P. Freeman Patient Navigation Institute. About Us. Viewed May 21, 2018.
- Academy of Oncology Nurse & Patient Navigators. Helpful Definitions. Viewed May 21, 2018.
- American Cancer Society. Patient Navigators Help Cancer Patients Manage Care. February 24, 2017. Viewed May 21, 2018.
- Tan 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.
- Tan 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.
- Academy of Oncology Nurse & Patient Navigators. Helpful Definitions. Viewed May 21, 2018.
- Academy of Oncology Nurse & Patient Navigators. Helpful Definitions. Viewed May 21, 2018.
- Iris Cohen Fineberg, quoted in Bauer A. Spotlight On: Oncology Social Workers—Part I, a Q&A. American Society of Clinical Oncology Cancer.net. April 8, 2014. Viewed May 21, 2018.
- Institute for Integrative Oncology Navigation. Survey of Integrative Oncology Navigation Training Alumni, 2009-2012. Smith Center for Healing and the Arts. May 2013.
- Roland 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.
- American Cancer Society. Patient Navigators Help Cancer Patients Manage Care. February 24, 2017. Viewed May 21, 2018.
- Renneker M. No Stone Unturned: Medical Advocacy Techniques for People with Cancer and Other Serious Conditions. Healing Circles workshop presentation, Commonweal. June 5, 2015.
- Nagourney RA. Cancer patients want to win, but is the playing field level? May 10, 2018. Viewed July 1, 2018.
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More Information
Patient Advocacy Organizations with Navigation Services
Medical Advocacy
Integrative Oncology Navigation
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Nancy Hepp:
Dec 11, 2019 at 11:10 PM
Erich,
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.
Nancy
Erich Loch:
Dec 11, 2019 at 10:00 AM
Hello. I'd like more suggestions on help with assisting my treatment for Myloma.
Thank you Erich