A Seat at the Table,But on Whose Terms? The Illusion of Meaningful Engagement

Abstract

While meaningful engagement of people living with health conditions is increasingly recognized as essential for the design of equitable and effective healthcare, research, and policy, tokenism persists across the global landscape. Despite the development and dissemination of frameworks and resolutions advocating for engagement, lived-experience contributors, as the authors of this article, still report feeling relegated to the margins of milestone meetings, signaling performative inclusion rather than genuine shared leadership. Instances of denied compensation, inferior housing accommodations, and unequal treatment further underscore a profound lack of respect and undermine any pretense of partnership. The foundational “nothing about us without us” remains absent from key global health resolutions and only deepens these concerns. This article contends that true meaningful engagement demands the embedding of nonnegotiable principles, including: substantive integration of lived experience throughout decision-making, equitable reimbursement, and resource parity. To move beyond mere symbolic gestures toward authentic partnership is not just ethical, it is essential for building trust and achieving truly people-centered systems.

Introduction

The global movement toward meaningful engagement of people living with health conditions (PLWHC) in healthcare, research, and policy has gained momentum. As contributors to this movement, this article is coauthored by individuals living with type 1 diabetes and other noncommunicable health conditions (NCHCs or NCDs) who have also worked extensively in global health systems, research, and advocacy. The reflections and recommendations presented are grounded in firsthand experience of navigating healthcare as PLWHC, and informed by years of professional engagement with efforts to improve equity and accountability in policy and program design.

Early 2010s, the world saw the publication of the “Patients Included” charter (2015), ¹ which guides organizations to demonstrate their commitment to including the experiences of PLWHC without exclusion or exploitation. However, this movement has not spurred since the WHO's Global Coordination Mechanism on Noncommunicable Diseases (NCDs) began consultations to people living with NCDs in the early 2020s, resulting in materials like the WHO's Framework for Meaningful Engagement of People Living with Noncommunicable Diseases (PLWNCDs).^2,3 This document states that “meaningful engagement is the respectful, dignified and equitable inclusion of individuals with lived experience in a range of processes and activities within an enabling environment where power is transferred to people; valuing lived experience as a form of expertise and applying it to improve health outcomes.” ² More recently, a resolution on social participation has been approved at the World Health Assembly (WHA) and garnered global support. ⁴ These developments signal a growing recognition of the invaluable insights and expertise that civil society and PLWHC bring to the table.

Individuals who have firsthand experience navigating health systems while managing their own health conditions bring invaluable perspectives. These contributions are essential for shaping truly person-centered care, research agendas, and effective health programs and policies.^3,5,6 Yet, the practical implementation of their meaningful engagement principles often falls short in global health decision-making. Indeed, it has been reported that when PLWHC are involved in milestone meetings or global health planning, it is often after decisions have already been made or in limited, symbolic ways. ⁵ Consequently, many current and emerging lived-experience contributors feel that their involvement is tokenistic at best.

Failing to meaningfully incorporate PLWHC expert experience, no matter how evidence-based the approaches are, risks suboptimal outcomes for designing policies and programs for the groups they are meant to serve. Instead, meaningful engagement incorporates real needs, challenges, and preferences from the target group, increasing potential of acceptance and effectiveness.^5,6 As an example, since 2017 in Brazil, increased civil society involvement (with 50% of participants being PLWHC and their families) in public consultations for new medical technologies has led to a significant change, reversing preliminary recommendations against incorporation into the public health system 3.87 times more often. ⁷ The question of “what is the benefit of having PLWHC meaningful engagement?” is as nonsensical as asking why clinicians, health system administrators, or other key stakeholders should be involved in these same decision-making processes.

Scientific evidence to justify meaningful engagement is not a fair requisite to defend the active participation of PLWHC in decision-making processes. It is a distraction that harms the basic right for participation in decisions that affect these individuals. ⁸ Just as a soccer player's input is crucial in choosing the right footwear for optimal performance, or a student's aspirations are central to selecting their field of study, the lived expertise of PLWHC is indispensable in shaping health interventions that meet their needs. To exclude their voices is shortsighted and undermines the legitimacy of the systems meant to serve them. What about specialists in education dictating a student's career path, ignoring the individual's unique perspectives and goals?

Personal Perspective

The authors’ collective experiences reveal a concerning pattern where the promise of meaningful engagement is overshadowed by extractive and inequitable practices. One example involves a recent project where PLWHC dedicated a cumulative 37 hours in meetings, in addition to the offline load, based on the explicit understanding of fair compensation for their time and expertise. The 11th-hour revelation that no or a minimum honorarium would be provided. As the only unpaid stakeholders in the room for about a year, this demonstrated a profound lack of value for the contributions of PLWHC to what was intended to inform future programs or policies, as well as research. This resonates with ethical concerns regarding the exploitation of individuals with lived experience and underscores the importance of fair remuneration as a matter of health justice,^1,9,10 particularly when our insights are meant to shape systems affecting our lives.

We have encountered instances of tangible inequity in various engagement settings related to healthcare delivery, research participation, and policy consultations. On different occasions, accommodations and transportation class provided for PLWHC have been demonstrably inferior to those afforded to other stakeholders, and per diem of insufficient amount. Such disparities, while seemingly minor, select the participation of few and convey a powerful message of marginalization and undermine the sense of equal partnership that meaningful engagement seeks to foster across all these areas.

A significant disparity exists in the institutionalization of meaningful engagement and fair remuneration of PLWHC between low- and middle-income (LMICs) and high-income (HICs) countries.^5,9 HICs, like Japan, offer a strong model, where the Dementia Working Group, founded by people with lived experience, has successfully influenced national policy at multiple government levels. ¹⁰ The group's members now hold seats on the government's dementia committee, demonstrating a powerful transfer of power that other nations could emulate. Meanwhile, some international organizations are actively strengthening meaningful engagement and advocacy in LMICs. The Life for a Child Changemaker Projects offer an encouraging approach: they fund and support advocates to lead community-based initiatives, alongside lived-experience mentors who are also compensated for their time and expertise. ¹¹ These projects go beyond financial support by working to integrate lived experience directly into advocacy, facilitating connections to global networks, and nurturing vital peer-to-peer mentorship.

Furthermore, despite the global unity on the importance of social participation in health systems, ⁴ the widely celebrated social participation resolution at the WHA 2024 notably omits the explicit articulation of the “nothing about us without us” principle. This principle is fundamental to genuine engagement, asserting that decisions affecting PLWHC, whether in healthcare, research, or policy, should be made with their direct participation with voice and vote power. The absence of this clear directive leaves room for the continued practice of including generic “civil society” representatives, who may lack the specific lived experience necessary to truly represent the needs and perspectives of those with particular health conditions when it comes to shaping the systems that govern their care and well-being. In addition, even with the exponential growth of opportunities for meaningful engagement of PLWHC, we still often see their recommendations disregarded in favor of preferences of funders and health system administrators. As we have previously highlighted, understanding and incorporating the nuances of lived experience is crucial for effective engagement in all domains, building efficient, effective, and sustainable solutions for real needs.^3,5,6

Practical Recommendations

This is a call for accountability across all stakeholders in the national and global health decision-making ecosystem, including but not limited to: research groups, global health advocacy organizations, governments, funders, and implementers. To move beyond tokenism and toward truly meaningful engagement of PLWHC in healthcare, research, and the design and implementation of programs and policies, we urge unwavering commitment to the following nonnegotiable principles:

Meaningful cocreation and integration: Lived experience is meaningfully woven throughout all stages of healthcare, research, and policy processes, not just placed into opening remarks or closing panels. Healthcare, research, and policy development embrace a model of cocreation, where the expertise of both PLWHC and other key stakeholders is equally valued and integrated throughout the entire process, from identifying needs to designing, implementing, and reviewing solutions.^5,6

Equitable reimbursement and support: PLWHC receive fair and transparent compensation for their time, expertise, and contributions, including full coverage of all associated expenses offered in advance. This recognizes the value of our lived experience and ensures that participation is not limited to those with financial means. ⁹ They are also provided with all necessary support to fully contribute, including accommodations for disability requirements.

Upholding “Nothing about us without us": This isn't just a slogan; it is a fundamental right and a prerequisite for effective and equitable health policies and programs. ⁸ Engagement processes prioritize the direct and meaningful involvement of individuals with the specific health condition relevant to the decisions being made, ensuring their voices are central. Generic representation from civil society is insufficient for truly people-centered outcomes. ⁵

Ensuring parity, respect, and transparency: PLWHC are treated with the same level of respect and provided with equitable resources and support as other stakeholders, including accessible formats and venues. Clear and mutually agreed-upon communication, including updates on project milestones, is maintained. Mechanisms for feedback and accountability regarding the meaningfulness of engagement are established.

Conclusion

Meaningful engagement means intentionally involving people with lived experience at the stages where decisions are made about their care, lives, or futures; not as a gesture, but as a right. While frameworks and movements advocating for meaningful engagement represent important strides in healthcare, research, and the development of effective health strategies, the lived experiences of many PLWHC reveal a persistent disconnect between stated intentions and actual practice across all these domains. Performative gestures of lived experience are not enough. Realizing genuine engagement will require stakeholders throughout the global, national, and local health systems to embrace being challenged, promote transparency, and reflect on power dynamics. Furthermore, a genuine organizational commitment to these principles strengthens the credibility and effectiveness of organizations themselves. Rather than reinventing established wisdom, we call for a robust adoption of the “Patients Included” charter, alongside the WHO's Framework for Meaningful Engagement of PLWNCDs. Together, these provide a concrete pathway to dismantle systemic barriers that perpetuate tokenism and to embed nonnegotiable principles of equity and active inclusion. Only through this fundamental shift can we move beyond illusion of participation to cultivate authentic and meaningful engagement and partnership that reflect and respond to the needs of PLWHC, ultimately strengthening the very systems meant to serve them.