By Carmen Monge-Montero
What is a Cancer Patient Advocate? Exploring Global Definitions
Probably you have just entered the cancer ecosystem and you look for information about this topic, you find courses, articles, training, news, and organizations talking about patient advocates. You may think: Is this something that you need to study at university? Is it a profession? Is it something that is applicable in my country?
You start looking and realize that there are many definitions depending on the country, the healthcare system, and even the organization. You are not alone in that. We looked at different terms in important oncology sources, but we also learned about practices in countries where the definition is not formally written but is actually practiced every day.
If we go to the root of the word in English, according to the Cambridge Dictionary, an advocate is someone who speaks for, supports, or represents a person or group of people who may need extra help or protection. In the case of a patient, it refers to a person who is receiving medical care. This is important in cancer because being a patient is not always a permanent condition; people can move through different stages, from diagnosis and treatment to survivorship or end-of-life care. Patient advocates bring perspectives that cannot always be captured by healthcare professionals, policymakers, or institutions.
Why is there no single global definition of patient advocacy?
The Union for International Cancer Control (UICC) has a broad definition on Patient Advocacy; “Raising awareness, informing policy decisions, and empowering people living with cancer and their families by providing a platform for them to be heard”. On this definition, it doesn’t limit the work on a hospital or a clinical trial, as we will see that the definition depends highly on the organizations and country role, it is a context-dependent role.
The first time that I heard about patient advocacy was when I moved to Europe. Not because we did not have patient advocacy in my home country (Costa Rica), but because nowadays it is getting more representation and visibility, not only in the global oncology ecosystem but also because high-income countries have had more time defining the role and working with patients to improve healthcare systems.
We see patient advocates everywhere nowadays. They can be in hospitals, patient organizations, clinical trials, social media, policy development, government, pharmaceutical companies, and many other places. However, the definition of what a patient advocate does depends highly on the organization, the country, and the healthcare context.
One example is the United States of America (U.S.), where organizations like the National Cancer Institute (NCI) describe patient advocates as patient navigators who help guide a patient through the health care system. This includes help going through the screening, diagnosis, treatment, and follow-up.
This is one definition of patient advocacy that reflects the importance of patient navigation within the U.S. healthcare system, but it is not the only definition used in the country. Others U.S. organizations also describe patient advocates as people with lived experience who participate in research, influence funding decisions, improve access and awareness, and bring the patient perspective into clinical and scientific environments.
In the European Union, similar to the U.S., there is not a single official definition that defines Patients Advocacy for the whole region. However, the role depends highly on the country and the organization is working. The Melanoma Patient Network Europe, for example, defines a patient advocate who has expanded her or his circle of concern to a larger group or patients, adding the term of patient advocate expert that involves a patient advocate with specific high-level expertise. In the Share4Rare toolkit for patient advocacy, the goal of patient advocates is to support their own communities, promote campaigns and advocate in the patient interest. In Europe, they are highly involved in policymaking, representation of patients in healthcare decisions, and defending patients when they experience barriers, malpractice, or situations where their rights are not respected,.
When I looked for definitions of patient advocacy in low and middle income countries (LMIC), there were very few sources. This does not mean that patient advocacy does not exist in those countries. It means that the role often develops according to the realities and needs of each healthcare system.
While in the high-income countries you can find formal training programs about patient advocacy for medical students, patient organizations, independent advocates and even the general public, patient advocates in many LMICs do not always have formal education on this topic or belong to formal organizations.
However, they are still essential. In low- and middle-income countries (LMICs), patient advocates contribute to health literacy, access to treatments and medicines, community education, activism, and legal actions. Their role can include responsibilities that, in countries with more resources, could be performed by nurses or social workers.
Because of limited resources, patients often depend on volunteer advocates who accompany them through different stages of the cancer care: taking patients from one test to another in the hospital, collecting medicines, helping families, requesting appointments, and providing emotional support.
The challenge of language and definitions
Patient advocacy is not always easy to translate, so a global definition is difficult to have. It could also be related to language, culture, and the professional backgrounds of the people involved.
For example, when I translate patient advocacy into Spanish, the direct translation is “defensa del paciente”. This translation gives a more legal sense to the role. Should patient advocates be lawyers?
But when we talk about the word patient, should they be doctors or nurses? And what happens when you are advocating for the rights of survivors? In that case, you are no longer working only within the medical field. This shows that the translation and official definition of patient advocacy can be confusing. However, the work is already happening, even if we still struggle to define it.
This is one of the reasons why OncoDaily uses the term Lived Experience Advocacy. Yes, it is a longer term, but the cancer journey is much longer than the time someone spends as a patient. By using Lived Experience Advocacy, we recognize not only people who are currently patients, but also survivors, caregivers, co-survivors, and others whose personal experience with cancer allows them to advocate for change. In addition, not everyone identifies with the terms patient or survivor. Research suggests that “lived cancer experience“ is a more inclusive and better-accepted term, as it reflects the diversity of experiences across the cancer ecosystem.
Building patient advocacy as a global movement
If advocates in high-income countries can participate in policymaking and propose laws, why should this not also be possible in LMIC? What are the tools to advocate according to your country? And how we can collaborate with other countries that advocacy is going to another level than just volunteering work.
Patient advocacy should become a global force, not only a privilege that high-income countries can afford. Understanding how advocacy looks in different communities is essential to creating healthcare systems where patients are not only recipients of care but active participants in shaping the future of oncology.
One of the objectives of this Lived Experience Advocacy Hub is to show patient advocates from around the world and how this role looks in different contexts. We will shape the global advocacy context and create a space where advocates can find the tools, resource and opportunities for trainings, research and grants.
You may also find this interesting:
