When we start working in patient advocacy, we encounter several additional terms that can easily cause confusion. In a previous article, we explored the global definitions of patient advocacy and discussed the use of lived experience advocacy. In this article, however, we will focus on the differences between patient advocacy, patient navigation, patient engagement, patient experts, advisory boards, and ambassadors.
Although these terms are often used interchangeably, they describe different roles and purposes. The distinctions are not always absolute, and one person may perform several of these roles depending on the context. The table below provides a practical overview of their main characteristics.
Key patient advocacy and engagement terms
| Term | What is it? | Main purpose | Who can do it? | Where can they work? |
|---|---|---|---|---|
| Patient Navigator | A person who helps individual patients understand and navigate the healthcare system and manage the practical and clinical logistics of their care. | To facilitate access to care, information, services, and resources. | Healthcare professionals, trained navigators, or volunteers. | Hospitals, cancer centers, community organizations, and non-profits. |
| Patient Advocate | A person who promotes and protects the interests, rights, needs, and priorities of patients or a patient community. | To represent patient perspectives and influence change. | Patients, survivors, caregivers and healthcare professionals | Patient organizations, NGOs, healthcare, research, policy, pharmaceutical and biotech companies. |
| Patient Engagement | A process through which patients are meaningfully involved in healthcare, research, or policy decisions. | To enable participation, partnership, and co-design. | Patients, caregivers, healthcare professionals, researchers, industry and policymakers. | Across healthcare, research, policy, and pharmaceutical/biotech settings. |
| Patient Expert | A person who combines lived experience with specific knowledge that enables them to contribute to healthcare, research, regulatory, or policy activities. | To bring lived experience and expertise into decision-making. | Patients or caregivers with additional training or technical knowledge. | Research, regulatory agencies, academia, healthcare, and pharmaceutical/biotech companies. |
| Patient Advisory Board | A group of patients and/or caregivers that provides feedback and perspectives to an organization, research team, or project. | To provide collective and structured patient input. | Patients and caregivers selected to provide diverse perspectives. | Academia, healthcare institutions, patient organizations, and pharmaceutical/biotech companies. |
| Patient Ambassador | A person who represents, promotes, or raises awareness of a patient organization, community, cause, or initiative. | To increase visibility, awareness, communication, and connection with wider audiences. | Patients, survivors, caregivers, advocates, or other individuals connected to the cause. | Patient organizations, public campaigns, media, events, social media, and sometimes pharmaceutical/biotech initiatives. |
A person with lived experience can be an advocate, an expert, and an ambassador at the same time, but each role implies a different purpose. Understanding these distinctions is particularly important when defining expectations, responsibilities, and compensation.
Apart from these terms, there are others that are commonly used in the advocacy space. Patient partner, patient representative, and patient advisor are related to patient advocate. We use lived experience advocate or lived experience expert when we describe everyone who has been affected by cancer, regardless of whether they are still patients or not. Patient involvement and patient participation are related to patient engagement. There are other terms, and they often overlap, but the context, purpose, and expectations can be different depending on the country and the organization.
Which other terms would you include in this list that are commonly confused in the patient advocacy world?
References
- Alliance for Clinical Trials in Oncology. Patient advocacy. Accessed August 17, 2026.
- National Cancer Institute. Definition of patient advocate. NCI Dictionary of Cancer Terms. Accessed August 17, 2026.
- Pelta S. Redefining cancer research with trained patient. Stanford Cancer Institute. Published February 4, 2025. Accessed August 17, 2026.
- Porter LD, Chlebowski RT, Spears P, et al. Patient advocates and researchers as partners in cancer research: a winning combination. Am Soc Clin Oncol Educ Book. 2023;43. doi:10.1200/EDBK_100035.
- SHARE4RARE. Who is a patient advocate? Accessed August 17, 2026.
- EUPATI. Patient advocates involved in clinical development. EUPATI Toolbox. Accessed August 17, 2026.
- Melanoma Patient Network Europe (MPNE). The difference between patients and patient advocates. Accessed August 17, 2026.
- NHS. Advocacy. Accessed August 17, 2026.
- Union for International Cancer Control (UICC). The vital role of patient advocacy in cancer control. Published April 19, 2023. Accessed August 17, 2026.
- Friends of Cancer Research. Glossary: Patient advocacy. Accessed August 17, 2026.
- ECHoS – Cancer Mission Hubs. Patient advisory boards. Accessed August 17, 2026.
- LinkedIn Community. What is the difference between patient advocacy and patient engagement? Accessed August 17, 2026.
Patient Advocate Foundation (PAF). About Patient Advocate Foundation. Accessed August 17, 2026.