Vandana Mahajan, Palliative Care Counselor, Cancer Counselor, Patient Advocate, and Cancer Survivor, shared on LinkedIn:
“What Does ‘Meaningful Patient Engagement’ truly mean?
Lately, I have been reflecting on this question.
Last month, I had the opportunity to speak at a few events about why people with lived experience (PWLE) of cancer must be seen not just as recipients of care, but as partners in shaping and delivering it.
As someone with lived experience of cancer and a patient advocate, I believe meaningful engagement is not just about giving patients a voice. It is about ensuring that voice has the power to influence decisions.
Lived experience brings something to healthcare that textbooks and clinical expertise alone cannot capture: the realities of navigating diagnosis, treatment, uncertainty, financial challenges, and life beyond cancer.
Yet too often, patients are invited to share their stories after decisions have already been made.
To me, meaningful engagement requires five fundamental shifts:
- Early involvement: Include PWLE from the beginning in shaping policies, research, treatment pathways, and care services.
- Recognition of lived experience: Value patient knowledge alongside clinical expertise.
- Shared decision-making: Empower patients to make informed choices with their healthcare teams.
- Equity and inclusion: Ensure that underserved, rural, and marginalised communities are heard and represented. Having worked closely with underserved communities, this is especially important to me.
- Accountability: Demonstrate how patient involvement has actually influenced decisions and improved outcomes.
Patients also need the information, training, resources, and opportunities to participate as equal partners.
As a person with lived experience, I don’t want my experience to be valued merely as an inspiring story. I want it to help improve care and make the journey easier for someone diagnosed tomorrow.
Ultimately, meaningful patient engagement is not measured by how many patients attend meetings or share their stories.
It is measured by what changes because they were involved.
Because having a seat at the table is not enough. What matters is having the power to shape the decisions made at that table.”
You can also read: WCC 2026 Highlights Common Sense Oncology and the Future of Patient-Centered Cancer Care
