A patient advocate can be defined as one who uses his or her role to promote and safeguard the well-being and the interests of patients within the community and the healthcare system by ensuring that they are aware of their rights and have access to the information they need to give informed consent and meet self-determination needs. The well-being of patients within the community and the healthcare system includes their health status, psychological distress, and quality of life throughout the care continuum. Patient advocacy is protecting the individual’s rights and autonomy, speaking up for individual and community needs, educating providers in the healthcare system on an individual’s preferences of care and their needs, and ensuring that the individual’s needs and preferences are integrated into the treatment and care delivery.
Patient advocacy is supporting and empowering patients to make informed decisions, navigating the healthcare system, and building strong partnerships with providers while working toward system improvement to support patient-centered care. Navigators facilitate decision-making support by providing education and imparting information that can help patients achieve their goals and work in collaboration through communication with the patient and the healthcare team. Navigators have the responsibility to provide patients with the best evidence-based care that includes treatment options, decision-making tools, culturally and health literacy appropriate educational materials, and full disclosure of cost, side effects, and impact on quality of life.
Activities for the navigator in the role of patient advocacy/patient empowerment include communication, education, cultural awareness, and the informed consent and decision-making process. It is imperative for navigators to communicate with the patient, not just to the patient. Communication must be bidirectional, with a collaborative exchange of information. Collaborative relationships built on a foundation of trust and open communication create an environment that supports the navigator’s ability to enact advocacy.
Providing education and support in decision-making is an important role of the navigator. Navigators must respond to information needs and barriers to patients obtaining information. It is very important for navigators to have a chance to get to know patients, when possible, before presenting education and resource materials. Patients have individualized educational priorities, and presented information and resources should reflect their needs and preferences. Tailored, evidence-based, and culturally and health literacy appropriate education can provide for more active, effective learning, increased knowledge, and result in improved patient outcomes.
The role of the navigator in assisting patients in the decision-making process should be patient-centered. Navigators promote patients’ rights and autonomy while identifying patients’ preferences. Open communication and shared decision-making can have an impact on quality of life. By providing evidence-based information and decision aides, navigators help to improve patients’ understanding of treatment options and help to improve patients’ decision satisfaction.
The National Coalition for Cancer Survivorship (NCCS) was founded in 1986 to make cancer patients view themselves as survivors, not victims, and to address the many issues that patients encounter during and beyond cancer. NCCS promotes patient self-advocacy as a way for patients to take charge of their care by ensuring that they have the information, tools, and resources for making the best informed decisions for themselves and to be an active part of their care. Nurse and patient (lay) navigators encourage patients in self-advocacy through their roles of patient advocacy and patient empowerment.