Non-adherence to treatment: more than a patient problem

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 says that when patients are listened to, respected, and engaged as partners, treatment adherence becomes about collaboration rather than compliance.

Content

When we talk about chronic disease, we often hear that "non-adherence to treatment" is a major risk factor for poor health outcomes. While that is true, the way we discuss it matters.

Missing the bigger picture

Too often, non-adherence is framed as a patient failing, as though people simply choose not to take their medications, follow treatment plans, or attend appointments. As both a patient and healthcare advocate, I believe this perspective misses the bigger picture.

Most people living with chronic disease want to stay well.

They want to avoid complications, maintain their quality of life, and spend less time in hospitals and clinics. Yet many still struggle to follow their treatment plans consistently. The question is not simply why aren't patients adhering? The better question is: what is making adherence so difficult?

Side effects, exhaustion and complexity

Living with a chronic condition is exhausting. It is not just about taking a pill or following a doctor's instructions. It means managing symptoms, navigating appointments, dealing with uncertainty, and trying to maintain some sense of normality while the rest of life continues around you.

For some people, medications cause side effects that are almost as disruptive as the disease itself. Others face financial barriers. Even in healthcare systems with public coverage, out-of-pocket costs for medications, transportation, rehabilitation, or supportive care can be significant. Some patients must choose between paying bills and filling prescriptions.

Then there is the complexity of treatment itself.

Many people with chronic diseases are managing multiple conditions and taking several medications each day. Keeping track of dosing schedules, monitoring symptoms, and coordinating appointments can feel like a full-time job.

What often gets overlooked is the emotional side of chronic illness. Fear, frustration, anxiety, and burnout can all affect a person's ability to engage with their care. There are days when simply getting through the day feels like an accomplishment. In those moments, adherence may not be a matter of motivation—it may be a matter of capacity.

Partners in care

I have also seen how communication gaps contribute to non-adherence. Patients frequently leave appointments overwhelmed by information they have only partially understood. Medical terminology can be confusing. Time with healthcare professionals is often limited. Many patients are reluctant to ask questions because they do not want to appear difficult or uninformed.

As a result, treatment plans are sometimes created for patients rather than with them.

When patients are not involved in decisions about their care, adherence can become unrealistic.

A treatment plan may look perfect from a clinical perspective but fail to account for the realities of a person's daily life. If it does not fit into their routine, financial circumstances, family responsibilities, or personal goals, sustaining it becomes much harder.

This is why we need to shift our thinking.

Instead of viewing adherence as a measure of patient compliance, we should see it as a measure of how well the healthcare system is supporting people to manage their health.

Healthcare providers, policymakers, researchers, and patient organizations all have a role to play. We need clearer communication, shared decision-making, simpler treatment pathways, and greater attention to the social and financial barriers that patients face.

Most importantly, we need to stop treating patients as passive recipients of care. Patients are experts in living with their conditions. They understand the challenges, trade-offs, and realities that no clinical guideline can fully capture.

Non-adherence is a signal that something needs attention

When patients are listened to, respected, and engaged as partners, adherence is no longer about compliance. It becomes about collaboration.

Non-adherence is indeed a risk factor for chronic disease. But it is also a signal that something in the patient's journey needs attention, support, or adjustment.

If we respond to that signal with curiosity rather than judgment, we can create healthcare systems that work not only in theory, but in real life. And ultimately, that is what improves outcomes for everyone.

Share your thoughts

Do you have insight on non-adherence to treatments, either as a patient, carer or healthcare professional? You can comment below (sign up first for free) to share your thoughts or submit a blog to the hub.