Applying High-Reliability Principles to Patient and Family Involvement in Care

Patient and family-centred care aligns clinical decisions, care processes and digital tools with patient goals, values and capabilities while retaining professional accountability for safety. High-risk care benefits when involvement is built into high reliability organising. Patients and families can report near misses, join rounds, handoffs and learning reviews after adverse events, and use structured shared decision-making. Digital tools can enable real-time escalation and continuity.

Key Points

• Patient-centredness aligns care decisions, processes and tools with patient goals.
• High-risk systems benefit when patient-centredness follows high-reliability principles.
• Patients and families can escalate safety concerns and near misses through clear routes.
• “Non-compliant” labels hide causes of non-adherence and weaken meaningful engagement.
• Shared decision-making combines clinical expertise with lived experience in key choices.

Introduction

Patient and family-centred care (PFCC) has been a fundamental goal of healthcare leaders for more than two decades. The modern quality and safety movement has identified patient-centredness alongside safety, effectiveness, timeliness, efficiency and equity as one of the defining aims of a high-performing health system (Institute of Medicine 1999; Institute of Medicine 2001). PFCC is respectful of and responsive to individual patient preferences and needs, ensuring that patient values guide all clinical decisions (Institute of Medicine 2001).

Despite this clear and compelling vision, most health systems remain largely clinician-centred in structure and behaviour. Implementation studies and umbrella reviews continue to show that patient involvement in decisions is variable, often superficial, and heavily dependent on individual clinicians and local culture (Grover et al. 2022). Preventable harm remains a significant problem, and patients and families are still too often excluded from information, decisions and safety processes where their input could make a difference (Myers et al. 2022).

There are at least two reasons for this gap between the healthcare industry’s PFCC goals and our reality. First, healthcare is a high-risk, technically complex and emotionally charged environment. Decisions often involve specialised knowledge, uncertain outcomes and trade-offs that are difficult to navigate even for experienced clinicians. Second, the concept of “patient-centred care” remains unclear and is inconsistently interpreted. Some clinicians understand PFCC as asking patients to make technical decisions for which they are not equipped, or as a threat to professional accountability for safety.

This article explores why efforts to advance patient- and family-centred care have stalled and how to align the concept more effectively with the realities of high-risk healthcare operations. Healthcare organisations need a clear operational definition of PFCC within a framework that reconciles meaningful patient involvement with the demands of safety and reliability. High-reliability organising, as described by Weick and Sutcliffe, offers such a framework (Weick et al. 2015; Myers et al. 2022).

Defining Patient and Family-Centred Care

PFCC typically includes:

• Treating patients and families with dignity and respect.
• Providing complete, comprehensible and timely information.
• Supporting patients to participate in decision-making at a level that matches their preferences and capabilities.
• Recognising and addressing physical, psychological, social and existential needs, rather than focusing only on disease (Grover et al. 2022; Giusti et al. 2020).

PFCC does not mean that patients are expected to make technical decisions about diagnosis, risk stratification or treatment options in the way a clinician would. It does not transfer professional accountability for safety and quality to patients and families. It does not require clinicians to provide any treatment a patient requests, regardless of evidence or appropriateness.

Instead, PFCC implies that clinicians bring their clinical expertise, knowledge of the evidence base and understanding of system constraints, while patients bring their lived experience, goals, values and contextual knowledge of their own lives. Shared decision-making is one practical expression of this partnership. It is a structured process in which clinicians and patients jointly consider the best available evidence alongside patient goals and preferences to arrive at a decision.

Preferences for involvement vary widely among patients. Some patients want to be active in comparing options and choosing a course of action. Others prefer to delegate decisions to clinicians once their values and circumstances are understood. A patient-centred approach recognises and respects this variation rather than imposing a single model of participation.

PFCC is best understood as the systematic alignment of clinical decisions, care processes and the digital tools and systems that support them with patients’ goals, values and capabilities, without relinquishing professional responsibility for safety.

Why Implementation of PFCC Has Stalled

Healthcare differs from many other service industries due to the inherent complexity of patient care. Clinical decisions are often made with incomplete information under significant time pressures and have the potential for serious harm. Safety research has consistently shown that adverse events arise more often from multiple, intersecting system vulnerabilities rather than a single error (Institute of Medicine 1999; Myers et al. 2022).

In this environment, clinicians may experience tension between the desire to involve patients and the obligation to protect them from harm. When healthcare decisions are complex, such as with oncology treatment, intensive care or therapies with significant toxicity or financial impact, it can feel unsafe to “hand over” decisions to patients who do not possess the same technical knowledge. In addition, health systems have historically been organised around clinicians and institutions rather than patients. Scheduling, information flow, governance and quality systems are often designed around professional roles and organisational units.

As a result, patients and families are still frequently excluded from handoffs, multidisciplinary rounds and discussions of adverse events. At organisational and system level, they remain under-represented in governance, quality improvement and strategic planning. In those systems where patient representatives are present, engagement can feel superficial (van Kessel et al. 2024). Reviews of PFCC implementation show that many initiatives are local, project-based or focused on documentation rather than redesign of core processes and structures (Grover et al. 2022).

The evidence base for PFCC shows benefits for satisfaction, communication and some process outcomes, but effects on clinical outcomes and costs are more variable (Grover et al. 2022). In addition, some implementations of PFCC have surfaced ethical tensions around privacy, equity and the distribution of responsibility between clinicians and patients.

This ambiguity has led some leaders to treat PFCC as primarily an experience or reputational initiative, rather than a core strategy for safety and reliability. As a result, it does not always receive the same disciplined attention as other safety programmes.

To truly improve the safety and reliability of patient care, healthcare organisations need a clear framework that positions PFCC as integral to the principles of high reliability.

A High-Reliability Lens

High-reliability organisations (HROs) operate in high-risk environments but achieve relatively few failures over long periods. Weick and Sutcliffe describe five organising principles that characterise such systems: preoccupation with failure, reluctance to simplify, sensitivity to operations, commitment to resilience and deference to expertise (Weick et al. 2015; Myers et al. 2022).

Applying these principles to PFCC can help close current gaps and identify practical directions for future improvement efforts.

Preoccupation with Failure

Preoccupation with failure involves constant alertness to the possibility of error, including weak signals and near misses. Patients and families are a critical but underused source of such signals. Complaints, informal comments and patient-reported near misses are often processed through separate, slow administrative pathways with limited impact on operational learning.

Digital tools, such as portals, symptom trackers and remote monitoring platforms, generate large volumes of patient-generated data. However, this information is not always connected to safety surveillance or escalation pathways (van Kessel et al. 2024).

A patient-centred interpretation of preoccupation with failure would:

• Provide simple, well-publicised routes for patients and families to raise safety concerns or report near misses in real time, with clear escalation and feedback.
• Integrate patient reported outcomes, experiences and safety concerns into routine safety monitoring and early warning systems, rather than treating them as separate “experience” metrics.
• Configure digital tools so that specific thresholds, patterns or expressed concerns automatically trigger review and, where appropriate, clinical contact (van Kessel et al. 2024).

Reluctance to Simplify

Reluctance to simplify means resisting overly simple explanations of complex systems. In PFCC, oversimplification often takes the form of labels such as “non-compliant”, “difficult” or “unengaged”. These labels conceal underlying clinical, social or structural drivers, such as health literacy, language, financial constraints, workload, caregiving responsibilities or mistrust of institutions (Grover et al. 2022).

At the system level, there is a tendency to talk about “the patient perspective” as if it were uniform. This can lead to one-size-fits-all approaches to engagement, digital tools or precision medicine, which may work well for some groups while excluding others (van Kessel et al. 2024).

A high-reliability approach would:

• Use qualitative and mixed methods to understand specific reasons for apparent non-adherence or disengagement before attributing them to individual behaviour.
• Segment patient populations not only by diagnosis, but also by preferences for information, decision-making, digital interaction and by social context.
• Involve diverse patients and families in co-design of processes, tools and materials, to surface complexity that internal teams may miss (Giusti 2020).

Sensitivity to Operations

Sensitivity to operations is about continuous awareness of how work is actually done at the front line. Many organisations measure patient experience through periodic surveys or retrospective interviews. These provide useful information but do not always capture real-time operational conditions or allow for a timely response (Grover et al. 2022).

There can be a disconnect between strategic commitments to PFCC and day-to-day decisions about scheduling, staffing, communication and use of digital tools. Patient portals, virtual visits and apps are sometimes layered onto existing workflows in ways that create parallel processes, confusion and frustration for both patients and clinicians.

A PFCC interpretation of sensitivity to operations would:

• Include patients and families, where appropriate, in multidisciplinary rounds, handoffs and discharge planning, with structures that support their participation and questions.
• Use real-time data from portals, remote monitoring and patient contacts to identify where delays, failures or confusion occur in the patient journey, and to adjust operations accordingly.
• Align appointment systems, communication channels and virtual care options with patient availability and preferences, particularly for people managing multiple chronic conditions or complex treatment regimens.

Commitment to Resilience

Commitment to resilience refers to the capacity to anticipate, absorb and adapt to disruptions while maintaining safe functioning. In PFCC, resilience is tested during care transitions, clinical crises and system disruptions, such as the COVID-19 pandemic or major technology failures.

Evidence suggests that while many organisations have implemented safety bundles and checklists, fewer have built robust capabilities for learning from failure and involving patients meaningfully in recovery and redesign (Myers et al. 2022). Patients and families are often excluded from formal reviews of adverse events and service disruptions, and communication after incidents may be delayed, incomplete or focused mainly on liability.

A resilient, PFCC system would:

• Establish clear processes for transparent, compassionate communication with patients and families after adverse events, including explanation, apology where appropriate and information about remedial actions.
• Involve patients and families directly in root cause analyses, learning reviews and co-design of corrective measures, recognising their unique insight into how systems function from the user perspective (Giusti 2020).
• Use digital tools strategically to maintain continuity of care during disruptions, for example by switching between in-person and virtual care, ensuring access to test results and care plans, and supporting self-management when services are constrained.

Deference to Expertise

Deference to expertise means that decisions are made by the person with the most relevant knowledge, regardless of hierarchical position. In healthcare, expertise has traditionally been equated with professional status. This can marginalise the experiential expertise of patients and families, who know their values, daily realities and tolerance for risk, as well as the expertise of disciplines such as nursing, pharmacy and allied health (Weick et al. 2015; Myers et al. 2022).

Shared decision-making is one way of enacting deference to different types of expertise. However, evidence suggests that it is still not routinely embedded in clinical workflows and often relies on individual clinician preferences (Hoque 2024).

A high-reliability, PFCC approach to deference to expertise would:

• Explicitly recognise clinical, experiential and data science expertise as complementary.
• Use structured shared decision-making and decision aids for preference-sensitive decisions, such as screening, elective procedures, high-risk treatments and trial participation (Hoque 2024).
• Train clinicians to elicit patients’ goals, constraints and preferences for involvement, and to recognise when patient or family expertise should drive decisions, such as determining the feasibility of home care options (Giusti 2020).
• Design digital health and precision medicine programmes so that algorithmic risk scores and recommendations support conversations with patients about what matters most to them (van Kessel et al. 2024).

Conclusion

PFCC remains a widely accepted goal in healthcare, yet organisations continue to struggle with meaningful improvements in safety, engagement and equity. Patients are often not consistently included as meaningful partners in decisions about their care or in the design of services and digital tools. At the same time, clinicians work in high-risk, complex environments where the consequences of error are significant, so patient involvement may be perceived as unsafe.

A core challenge for most healthcare organisations is the lack of alignment between PFCC initiatives and high-reliability principles. PFCC is frequently treated as a patient satisfaction initiative rather than integrated into the high-reliability practices that reinforce safety and reliable performance.

By reframing PFCC through the five principles of high-reliability organising, leaders can strengthen their approach. Preoccupation with failure invites systematic use of patient insight in detecting and learning from problems. Reluctance to simplify encourages deeper understanding of diverse patient contexts. Sensitivity to operations focuses attention on real-time experience of care. Commitment to resilience brings patients into processes of recovery and redesign. Deference to expertise recognises patients’ experiential knowledge as essential alongside clinical and data science expertise.

If patient and family-centred care is to become routine in the high-risk healthcare environment, it must shift from being seen as an optional initiative to a core organising principle that is fully integrated with high-reliability principles.

Conflict of interest

The author declares no conflicts of interest.