Lisa Machado is a healthcare advocacy leader, storyteller, and journalist who champions the power of patient voices in transforming care. As the founder of a patient organization and a national speaker, she works across sectors to advance health equity and bring narrative into medical practice. She also teaches literacy at George Brown College and consults on patient engagement and communications. 

In this Q&A with Creative Lead Damian Tarnopolsky, Lisa shares how her own cancer diagnosis and caregiving experiences exposed the emotional and systemic gaps in healthcare. She shares how patient stories can shift clinical perspectives, helping providers see people beyond their conditions. By making space for honest conversation, she believes healthcare can become more compassionate, responsive, and truly patient-centered. 

Damian: To begin, please tell us a little about yourself and your work. Why does patient experience matter, and how has your own journey influenced your advocacy for patient stories? 

Lisa: First of all, thanks so much for the opportunity to speak with you. I am a Toronto-based healthcare advocacy writer and communications consultant. Much of my work focuses on narratives in medicine. I also run a patient organization and teach literacy at a local college. I used to write about investing, but then I was diagnosed with a rare blood cancer. This experience really opened my eyes to what it meant to be a patient — and it’s no fun. I had already had a front-row seat to the gaps in care through my brother, who contracted HIV and Hep-C, in the tainted blood scandal, and then died from liver cancer, and my dad who developed early-onset dementia. 

What I saw throughout all of this was, of course, the systemic issues that we are still grappling with today, like medication and clinical trial access, doctor burnout, and persistent deadly hallway medicine, but even more impactful than this was the deep link between how patients and caregivers were perceived by their care providers and the quality of outcomes. 

So, I started writing about it — how COVID visiting rules meant that my brother died alone, the amount of advocating it took just to ensure that my dad had his face wiped after being fed a meal, what it was like to live with a chronic cancer, and so on. It became clear quickly that these were more than just simply stories. They were also important communication tools that not only connected with other patients and caregivers in a meaningful way, but also challenged clinicians to think about patients more holistically — as people with expectations and hopes and lives outside of the clinic, instead of just symptoms, side effects, and prognoses that needed to be dealt with. 

Damian: What do you see as the greatest challenges facing patients today? How can incorporating the patient story into healthcare make a difference? 

Lisa: There are so many challenges facing patients today. From lack of access to life-saving medications to doctor shortages and delays in screening and diagnostic tests, it’s really difficult to be a patient. There are also the emotional health impacts of illness and managing treatment — things that we don’t necessarily do a great job of addressing within clinical practice. This is where narrative-based medicine — conversations — become especially important. I think that many health practitioners forget that the people they see in their offices are not just their condition or illness, but actually human beings with a whole life outside of the exam room. Why is this relevant? Because our lives, our beliefs, our childhoods, the emotional baggage we carry, etc., these are the things that affect not only our health, but also our perception of health and how we approach our treatment, whether we are adherent or not, and so on. 

Imagine a person who shows up to their doctor with chronic headaches. A practitioner who incorporates narrative medicine into their practice is always looking for the rest of the story, for another perspective. They might ask the patient when they get headaches, perhaps where they are and what they are doing. Say the patient then shares that the headaches happen after a long day of caring for her terminally ill father, when she hasn’t eaten, oh yes, and she barely gets any sleep. This information changes everything, doesn’t it? 

Damian: What would you most like health practitioners to know about their patients? What are the best ways to integrate patient narratives into healthcare practice? 

Lisa: Health practitioners need to know that patients and caregivers are people outside of their condition and they absolutely deserve the opportunity and space to share honestly and without judgment how their symptoms, condition, and treatment impact the amount of happiness and joy they get out of living. I have said this at physician conferences and there is inevitably an eye roll or two, but go ahead and roll away, because if you aren’t making room for narrative in your practice, you cannot possibly be providing the most effective care for your patients. 

Narratives can be integrated in several ways, including open-ended questions that leave room for the patient to express their feelings and provide clues to how they are really doing. Don’t interrupt or judge. There are also tools like surveys, digital apps, diaries, or journals that can be used to collect experiential information. Another very effective way to learn more about the patient experience is to engage with patient organizations, which are often connected to communities rich with insights about clinical challenges, treatment difficulties, and how to move to a place where care is authentically centered on the patient. 

Narrative-based medicine is reimagining how healthcare interacts with and essentially serves patients and caregivers. I often say that healthcare is the one business that doesn’t seek out the opinion of the end user. Think about the last time you were asked what you thought about a service that you interacted with — maybe it was the app you used to reserve a table for dinner, or your internet provider or bank. Even grocery stores incentivize customers to share thoughts and ideas related to their shopping experience. But in healthcare, the very most important service that we need and use, we are never asked about our experiences, what we think, or how we would make improvements. This, despite the fact that — just like the person eating at that restaurant, or at the other end of that Wi-Fi connection, or in the lineup to see a teller — the end users (us) are the ultimate experts on what’s not working and the ways that things can be better.