The Safety Experts We Keep Overlooking: Why Meaningful Patient and Family Engagement Matters Across the NCD Journey

For decades, patient safety leaders have refined theories, frameworks, measures, and technology-enabled systems in pursuit of safer care. Yet the paradox remains: as our approaches grow more sophisticated, we continue to overlook the most essential safety experts – the people living the journey.

The illusion of engagement is that we can invite people into systems designed from the inside out and still call them person-centered. Too often, engagement happens after decisions are made, instead of shaping what gets designed from the start. World Patient Safety Day 2026, focused on safe care for noncommunicable diseases (NCDs), is a chance to reverse that starting point: to begin with what matters to people, what works in their lives, and what they experience as safe.

Safety Across a Lifetime, Not Just an Encounter

NCDs, including cardiovascular disease, cancer, diabetes, and chronic respiratory disease, unfold over years or a lifetime. They carry enormous costs and consequences for individuals, families, communities, and health systems – including avoidable patient safety problems when care is fragmented, delayed, inequitable, poorly coordinated, or misaligned with patient goals and preferences. The journey crosses ambulatory and inpatient care, clinicians’ offices, pharmacies, homes, community services, and increasingly digital platforms. At every transition, safety can either be strengthened or fractured.

People living with NCDs often see the whole journey in ways no single clinician, organization, or technology platform can. They know whether a care plan is aligned with their goals, understandable, affordable, realistic, and safe to carry out in daily life. They see where instructions conflict, follow-up fails, and the work of managing multiple conditions becomes unsafe. This lived experience is vital and often untapped safety intelligence.

Healthcare’s Graft-Versus-Host Disease

Cancer and transplant care teach us that a graft cannot succeed without deeply understanding the host and the conditions that matter to compatibility. Yet healthcare creates its own version of graft-versus-host disease when we design or prescribe care without meaningfully understanding and engaging the very person who must live it. This is especially true in NCD care, where the “graft” is not a single intervention but an ongoing plan that must fit the host’s life and personalized needs over time. Healthcare’s version of safe care cannot simply be grafted onto someone’s life. It must begin with what matters to the host.

One major example is that the harms that matter most to patients and families are often not visible in how safety is defined or measured. Emotional distress, financial burden, indignities, disrespect, bias, inequity, and the exhaustion of navigating fragmented systems may be deeply felt while remaining invisible in traditional safety metrics. From patients’ and families’ perspective, safety means both being safe and feeling safe. 

For NCDs, healthcare must move beyond organizational process measures as the primary signal of safe, high-quality care and make greater use of measures that matter to people, such as patient-reported experience measures, patient-reported outcome measures, and initiatives like Project Pivot that elevate the patient’s voice in diagnostic safety. This shift more meaningfully reflects whether care improves functioning, confidence, quality of life, reduces burden, enhances experience, and supports safety in daily life.

Moving Beyond the Myths of Engagement

Several persistent myths keep healthcare from making engagement meaningful: 

• Satisfaction is the same as experience
• Feedback after care is designed or received equals coproduction
• Engagement means helping people comply with a plan
• Clinicians and organizations alone hold essential safety expertise

Meaningful engagement begins with an outside-in understanding of what matters to the patient as the host, designing solutions with people at all steps of their journey, testing whether care is understandable, affordable, and realistic, and recognizing lived experience as indispensable safety intelligence.

Making Engagement Meaningful

Recent developments offer a pathway to this shift. Safer Together: A National Action Plan to Advance Patient Safety, the World Health Organization’s Global Patient Safety Action Plan, and the CMS Patient Safety Structural Measure each reinforce the same message: patient and family caregiver engagement belongs at the core of essential safety work, not at the margins. The Patient Imperative, recently released by the American College of Healthcare Executives and created in collaboration with IHI’s Lucian Leape Institute, makes this obligation especially clear by calling on healthcare leaders to place patients’ needs, values, safety, and outcomes at the center of every decision and action, from the boardroom to the bedside. Age-Friendly Health Systems offers a practical lesson through the 4Ms Framework, where “What Matters” is not an added courtesy but an essential element that shapes how care is understood and delivered.

But structures and language alone are not enough. On World Patient Safety Day, every healthcare, safety, and quality leader should ask whether engagement is visible in how their organization makes decisions, identifies risks, measures what matters, and tests change across the full NCD journey:

• Are we designing NCD care around the full life journey – from prevention and diagnosis through treatment, management, and daily living – or around the fragmented incentives, settings, organizational boundaries patients must navigate?
• Are people living with NCDs helping define what safe, high-quality care means and how it is measured –  including whether care is understandable, affordable, culturally responsive, equitable, realistic, and safe to carry out over time?
• Are we proactively reducing the safety risks such as delayed diagnosis, conflicting instructions, care plan burden, weak follow-up, inequitable access, and poor coordination before patients and families are left to absorb them?
• When patients and families identify risks, confusion, or harm, do we reliably learn from them, act on what they reveal, and show what changed as a result?

Reverse the Starting Point

Putting patients and families at the center of NCD safety does not mean adding another advisory group, survey, or engagement requirement. It means accepting healthcare’s fundamental obligation to begin with people’s lives, making their expertise central to defining and designing what safe and high-quality care requires to eliminate harm rather than shift the burden of risk onto the very people they are meant to serve.

For too long, healthcare has designed around the boundaries and interests of institutions and then asked people to navigate what we created. Safe care for life requires the reverse: care designed around what matters to the person and the journey they take across time, settings, conditions, and daily life.

The person living the journey is the host, not a guest in the safety system. They are the experts the system cannot be safe without. If we are serious about safe care for life, we cannot keep grafting care onto people’s lives and calling it safe. We must design with the hosts – the people whose lives depend on us to get it right.

Patricia A. McGaffigan, MS, RN, CPPS, CPHFH, CPAFH, Senior Advisor, Patient Safety, Institute for Healthcare Improvement (IHI), and President of the Certification Board for Professionals in Patient Safety.

Photo by National Cancer Institute on Unsplash

You may also be interested in:

• The Patient Imperative: A Blueprint for Success
• A National Action Plan to Advance Patient Safety
• Framework for Effective Board Governance of Health System Quality | Institute for Healthcare Improvement
• Safety Is Personal: Partnering with Patients and Families for the Safest Care | Institute for Healthcare Improvement