From participant to partner: moving from patient-centred to patient-led healthcare (a cardiac patient’s perspective)

Summary

Risa Mallory is a retired psychotherapist from Canada and a hub Topic leader. After a serious cardiovascular event in 2018 she became a patient advocate, collaborating with organisations across the globe. 

In this blog, Risa contends that patient-centred care provides a good foundation but should not be the end goal. She calls on healthcare systems to evolve towards patient-led care, suggesting that this is key to ensuring that patients are treated as partners rather than participants. 

Content

When you live with heart disease, healthcare stops being abstract very quickly. It becomes personal, constant, and at times overwhelming. Appointments, medications, test results, lifestyle changes—these are not theoretical concepts, they shape how you live each day. Over time, I have learned that how care is delivered matters just as much as what care is delivered. That is where the distinction between patient-centred and patient-led healthcare becomes meaningful.

Patient-centred care

Patient-centred care is a term I hear often. Clinicians use it to describe care that considers my needs, values, and preferences. On the surface, this sounds exactly right. As a cardiac patient, I want to be treated as a whole person, not just a heart condition. I want my concerns listened to, my fears acknowledged, and my circumstances taken into account. When patient-centred care is done well, it feels respectful. My cardiologist explains options, my nurse checks in on how I’m managing, and decisions are made with me, not just about me.

But as someone who lives with this condition every day—not just during clinic visits—I have come to realise that patient-centred care still often keeps control firmly within the healthcare system. The care may be tailored to me, but it is usually still designed, paced, and directed by professionals. I am invited to the table, but I do not always get to set the agenda.

That is where patient-led healthcare differs.

Patient-led care

Patient-led care recognises something fundamental: I am the one living inside this body. I am the one who feels the side effects, manages the fatigue, navigates fear after a hospital admission, and tries to balance medical advice with real life. In a patient-led model, my lived experience is not just considered—it is treated as expertise.

As a cardiac patient, being patient-led does not mean I reject clinical knowledge or expect to make decisions alone. I still rely deeply on my healthcare team’s training and experience. What changes is the balance of power.

Instead of being asked, “What matters to you?” after decisions are mostly formed, patient-led care asks that question at the beginning—and allows the answer to shape the pathway forward.

For example, when discussing treatment options, patient-centred care might present several evidence-based choices and ask which one I prefer. Patient-led care goes further. It asks how those options will affect my daily life, my mental health, my ability to work or care for family, and whether the recommended plan is realistic for me to sustain. It allows me to say, “This may be clinically ideal, but it doesn’t fit my life,” without fear of being labelled non-compliant.

From participants to partners

The difference becomes especially clear after a cardiac event. In hospital, patient-centred care might ensure good communication, compassionate interactions, and shared decision-making. Once discharged, however, the burden of care shifts heavily onto the patient. Medications, monitoring symptoms, lifestyle changes—suddenly, I am expected to lead my own care without always being given the tools, confidence, or ongoing support to do so. Patient-led healthcare recognises this gap and works to close it.

Patient-led care values partnership beyond appointments. It supports education that empowers rather than overwhelms. It acknowledges emotional recovery as part of cardiac recovery. It invites patients into service design, research priorities, and policy decisions—not as a token gesture, but as equal contributors. After all, systems built without patient input often fail to meet patient needs.

From my perspective, patient-centred care is an important foundation, but it is not the end goal. It still positions patients as recipients of care, even when that care is compassionate and individualised. Patient-led healthcare moves us from being participants to being partners. It trusts that patients, when supported appropriately, can help guide better, safer, and more humane care.

Living with heart disease has taught me that my voice matters—not just in my own treatment, but in shaping the systems meant to support people like me. True progress in healthcare will come when patient-centred care evolves into patient-led care, where lived experience is not an afterthought, but a driving force.

More blogs by Risa

• Compassion is medicine: a patient safety perspective

• The power of being heard in healthcare

• When lived experience is embedded at every stage of research

• Women’s heart health - a patient safety priority

• Why the patient voice matters when things go wrong

About the Author

Risa Mallory, a retired psychotherapist from Canada, became an advocate for patient healthcare following a serious cardiovascular event in 2018. Through her collaboration with local, national, and international healthcare organisations and institutions, she contributes the perspectives, priorities, and feedback of patients to healthcare decision-making at all levels, from individual care to organisational policymaking. She firmly believes that knowledge is power and that every individual can impact their health, and the health of their communities, through increased literacy, open dialogue, and advocacy.