I’ve been a caregiver, a patient advocate, cancer survivor, and oncology patient navigator for over two decades.
And I need to say something clearly and honestly.
It's 2026. If organizations are hosting healthcare and cancer conferences without patients in the room, they are not creating patient-centered systems. They are creating professional echo chambers.
Patients are not medical professionals. Many are in active treatment. Many are disabled. Many are living on fixed or limited incomes. Expecting patients to pay their own way to attend conferences, travel, hotel, registration, meals, automatically excludes the very voices these events claim to represent.
That is not inclusion. That is just optics.
Patients bring lived expertise that no degree, title, or panel discussion can replace. We are the ones navigating side effects, access barriers, financial toxicity, fragmented care, and survivorship realities every single day.
Without patient voices, policies, programs, and research priorities risk being built around assumptions instead of real needs.
If patients are not present, supported, and valued, then the systems being designed are not truly patient-centered.
Organizations must do better.
Including patients means budgeting for patients. It means removing financial barriers. It means creating space for real-world experience, not just professional perspectives.
Anything less is not advocacy. And it is not acceptable.
In 2023, I began consulting with organizations that truly put resources behind their commitment to patients, not just words. These are organizations that understand that if they invite patients into the room, they are responsible for removing the barriers that keep patients out. At LiveLung.org educational events, webinars, trainings, and retreats, when a patient is accepted to attend, every cost is covered; travel, lodging, registration, and meals.
That level of support doesn’t just make participation possible; it sends a powerful message that patient voices are valued, respected, and essential. Investing in patients, their lived experience, and their advocacy work strengthens awareness efforts, deepens credibility, and ultimately helps drive funding and momentum for lung cancer research and policy.
How do you work to include patients in your organization? Will you commit to do better?
And I need to say something clearly and honestly.
It's 2026. If organizations are hosting healthcare and cancer conferences without patients in the room, they are not creating patient-centered systems. They are creating professional echo chambers.
Patients are not medical professionals. Many are in active treatment. Many are disabled. Many are living on fixed or limited incomes. Expecting patients to pay their own way to attend conferences, travel, hotel, registration, meals, automatically excludes the very voices these events claim to represent.
That is not inclusion. That is just optics.
Patients bring lived expertise that no degree, title, or panel discussion can replace. We are the ones navigating side effects, access barriers, financial toxicity, fragmented care, and survivorship realities every single day.
Without patient voices, policies, programs, and research priorities risk being built around assumptions instead of real needs.
If patients are not present, supported, and valued, then the systems being designed are not truly patient-centered.
Organizations must do better.
Including patients means budgeting for patients. It means removing financial barriers. It means creating space for real-world experience, not just professional perspectives.
Anything less is not advocacy. And it is not acceptable.
In 2023, I began consulting with organizations that truly put resources behind their commitment to patients, not just words. These are organizations that understand that if they invite patients into the room, they are responsible for removing the barriers that keep patients out. At LiveLung.org educational events, webinars, trainings, and retreats, when a patient is accepted to attend, every cost is covered; travel, lodging, registration, and meals.
That level of support doesn’t just make participation possible; it sends a powerful message that patient voices are valued, respected, and essential. Investing in patients, their lived experience, and their advocacy work strengthens awareness efforts, deepens credibility, and ultimately helps drive funding and momentum for lung cancer research and policy.
How do you work to include patients in your organization? Will you commit to do better?
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