Types of Cancer Advocacy

People who have or had cancer and their family members sometimes turn their energies towards making a difference for others in the cancer community. We call this "cancer advocacy." This page discusses the many types of cancer advocacy and how it may evolve over time.

Self Advocate

Self advocates are people who have cancer and share knowledge of their own body's symptoms and side effects with their healthcare providers, ask informed questions of their clinicians, and consult reliable sources and/or participate in patient groups (online or in person) to learn more about their condition.

Advocates for self or a family member
May know a little or a lot about their health condition
Focuses on treatment for self or a family member
Emotions play a significant role in decision making

Patient Advocate

Patient advocates are dedicated to assisting others who have or had lung cancer.

Advocates for others living with lung cancer
Has more in-depth knowledge about their health condition
Focuses on influencing the healthcare system and/or research
Emotions are channeled into working for larger community

Patient Advocacy Takes Many Forms

Self-Advocacy

Leads to...

Patient advocacy is an umbrella term for many different activities. These include providing emotional support and information directly to other people (patient support), improving lung cancer education and outreach, and fundraising for research. These frequently involve sharing one's own cancer experiences (or the experiences of a loved one) to help others understand what it's like to be a person diagnosed with cancer.

Two specialized areas of patient advocacy are Policy Advocacy and Research Advocacy.

Research advocates are people with a personal connection to cancer who are passionate about helping research translate into meaningful outcomes for patients and their families. Research advocates provide the perspective of the cancer patient community to help researchers focus on the questions most important to patients and create studies that will extend lives and improve the quality of life for people who have cancer.

Policy advocates use their cancer experiences (and the experiences of other patients) along with knowledge of cancer care to influence governmental and healthcare policies to benefit patients. One example of policy advocacy is changing health insurance laws so that lung cancer screening is covered for people at high risk for developing lung cancer. Another example is helping to change policies or procedures at healthcare facilities to make lung cancer biomarker testing more accessible to a wider variety of people. Policy change often requires evidence-based data; therefore, some policy advocate efforts will require a knowledge of science and research to be effective.

Research advocacy is the focus of the IASLC STARS Program.

How Is Research Advocacy Different?

Patient Advocacy

Shares personal cancer experiences and experiences of other patients
Supports patients and caregivers
Raises awareness and/or funding
Provides patient-friendly education and outreach about lung cancer care

Research Advocacy

Shares patient experiences reflective of the broader lung cancer community (not just one's own experiences)
Provide patient perspective on research to generate better outcomes
Uses effective communications skills with clinicians, researchers, and government agencies to highlight unmet needs of the community
Understands clinical trials, the medical research process, and the science behind the diagnostic pathway and treatment for their condition and shares with the broader community