Lived experience insights: Shifting power dynamics for a meaningful say in people’s health

Back in 2016, my family and I were preparing for my kidney transplant. A close friend who had undergone a transplant a year earlier decided to visit us. He wanted to encourage, inform, and help dispel the misinformation and disinformation we had been grappling with after going public with my kidney disease story and journey toward transplantation. 

Kidney transplant surgery and post-transplant care are incredibly expensive, and we had shared my story publicly in an effort to raise funds. This exposed us to a flood of different opinions, including that donors may get kidney disease themselves or would be unable to have children post-donation. Most of these were misinformed and many I wasn’t ready to hear. This bombardment of unsolicited advice made me less confident about pursuing a kidney transplant. 

I vividly remember my conversation with my friend, who had gone through the procedure with his father as his donor. It felt different! Finally, I was speaking with someone who had actual, lived experience. He laughed off many of the myths I repeated, clarified the murky areas, and gave me practical tips for navigating surgery and life post-transplant. I felt so much more confident, and I was deeply grateful for his experience-backed wisdom. We eventually went through with the transplant, and it completely changed my life. So much so, it kickstarted my health advocacy journey.

Now imagine what the same lived experience can do if placed in the right participatory spaces, for example to improve entire healthcare systems. I remember what it felt like, newly diagnosed with chronic kidney disease: I was no longer a “once in a while” patient—I was now a regular, going in for dialysis and meeting with healthcare providers every other day. I recall disagreeing with my nephrologist for the first time. From the beginning, our relationship had a subtle teacher-student dynamic, and there I was—25 years old, barely two months post diagnosis—disagreeing with her recommendation for peritoneal dialysis. She believed it was best for me: more energy, a less restrictive diet, and more flexibility. I understood the benefits, but the thought of dialyzing by myself at home was terrifying. What if something went wrong? That thought alone haunted me. She didn’t take my resistance well, and our conversations escalated until I opted for another nephrologist. There’s nothing wrong with peritoneal dialysis, it just didn’t work for me at the time. 

Looking back, I wonder: if we’d had a more open, peer-to-peer conversation, could we have co-created something more impactful? Maybe even a support group for young people on peritoneal dialysis? I’m sure my health outcomes, and those of young people in similar situations, could have been much better. If the spaces where policies are made are not sufficiently participatory,  and people with lived experience aren’t meaningfully engaged, then the respective policies and health systems will only work on paper.

The meaningful engagement movement is focused around redistributing power more equally among stakeholders. It is this very premise that helps dismantle the teacher–student dynamic that often defines the relationship between healthcare professionals and the people they care for. Much like I did, many others with lived experience have put in the work to learn about our conditions as part of this empowerment journey.

Yet, the spaces where health-related decisions are made at national, regional, and even global levels remain largely closed and restricted to healthcare professionals. In traditionally centralized health systems, top-down power dynamics persist with a few individuals making decisions that affect many. While there are exceptions, in most cases, those few with decision-making power have limited lived experience within the very health systems they create. This often results in systems that work in theory, but not in practice—because they haven’t been co-created. To make matters worse, public stigma and discrimination that often accompany chronic illness silence many who might otherwise speak up about their experiences. This silence leads to fewer advocates, weaker feedback loops, and ultimately less data on what is or isn’t working.

Health systems reflect the societies in which they operate. Without action to address the disadvantages faced by populations who experience discrimination or marginalization, health systems can perpetuate inequity - WHO Framework for Meaningful Engagement

Knowledge

WHO framework for meaningful engagement of people living with noncommunicable diseases, and mental health and neurological conditions

I love the simplicity of Lao Tzu’s quote, “If you do not change direction, you may end up where you are heading.” It holds true for the health systems we’ve inherited. Many remain largely unchanged, held back by the all-too-common mindset of “we’ve always done it this way” or “this is how it’s done.” But meaningful engagement is about more than just health. It is about transforming the societies we live in, one person at a time. It’s about shifting how people think about non-communicable diseases (NCDs) and those living with them by committing to sustainable funding for capacity-building initiatives, such as mentorship, training programs, knowledge exchange opportunities, and health literacy development for people with lived experience, caregivers, and family members.

Knowledge

Key advocacy messages for meaningful engagement of people living with NCDs, mental health and neurological conditions

We need to change the narrative to one where people can live full, thriving lives, regardless of their condition, because the health system is equipped and ready to support them in achieving their best health outcomes without causing financial strain. To get there, we must ask difficult questions, co-create solutions, and push for change when the current way of doing things no longer serves us. 

Joab is a lived experience advocate and steering committee member of the WHO Symposium on Meaningful Engagement. In November 2016, he received a kidney from his sister after spending a year and a half on dialysis.

This Lived Experience article is part of a Perspectives Series featuring firsthand accounts from people living with noncommunicable diseases, mental health or neurological conditions. It highlights key advocacy messages from the WHO Symposium on the meaningful engagement of people with lived experience of NCDs, mental health, and neurological conditions, as part of global advocacy efforts leading up to the United Nations General Assembly's Fourth High-Level Meeting on NCDs on 25 September 2025.