An end to the “muffin meeting”: Conceptualizing power and navigating tokenism in patient engagement for health leaders

Introduction

Patient Engagement (PE) is emerging as an important concept and practice in Canadian healthcare settings. Healthcare systems, organizations, and leaders are identifying it as a priority and an increasingly necessary component of quality improvement and health service planning and design.^1,2 It is also increasingly becoming embedded as a part of organizational strategic planning and governance functions. ³ While various definitions have been offered, this article utilizes the term PE to refer to the many ways that patients are involved as members of the public and as service users ⁴ to share their experiences of accessing healthcare ⁵ to contribute as equal partners, in non-clinical settings, to organizational change, service planning, and the overall improvement of healthcare. ⁶

The increased calls for PE as a catalyst for improvement and change has been characterized as an evolution of ideas of person-centred care, reflecting broader desires to shift from paternalistic models of healthcare^7,8 towards healthcare services that are shaped with patients as equal partners. ⁹ Further, it has been articulated that PE at service and organizational levels can help to design and deliver care that improves health outcomes, patient safety, and is more efficient.^1,2,6,10 In spite of these imperatives and benefits, and alongside the proliferation of PE efforts in healthcare organizations, awareness that the outcomes of PE sometimes fail to meet these inherent goals, and result in experiences of tokenism for the patients who participate in them, is gaining increased attention.^1,7 As such, recognizing and mitigating tokenism in PE is seen as a critical challenge facing healthcare organizations and leaders. However, this article proposes that in order to effectively mitigate tokenism, leaders must pay critical attention to the concept and role of power in enabling it in the first place.

By offering the metaphor of the “muffin meeting,” this article seeks first to provide health leaders with a deeper understanding of tokenism as it relates specifically to PE and contends that deeper analysis of conceptualizations of power is necessary to adequately begin to address tokenism within PE efforts. Utilizing the concept of biopower, this article provides a lens through which health leaders can draw connections between knowledge and power within health organizations and how they shape unequal access to power in interactions with patients. This article then offers health leaders a set of ideas that can aid in taking a reflexive approach to better understand and navigate power in PE efforts.

The “muffin meeting”

Imagine that you have been invited to a meeting with leaders from a healthcare service you have utilized as a patient. The meeting is to discuss ways to improve the experience of care. Beyond your personal experiences, you do not have information about how the service was designed, the policies and procedures that shape care delivery, or any administrative challenges experienced by the service. However, you do know how accessing care through the service felt to you at various stages and you feel you have experiential knowledge to share that could lead to improvements. You have taken the morning off from work to attend the meeting. You arrive and sit with several other patients and program staff around a large table. Refreshments have been provided, including a tray of muffins.

Someone introduces themselves as the manager of the program and explains the meeting is to brainstorm ideas on how to improve the experience for patients within the service. After introductions, staff and patients start sharing observations and stories about patient experiences that could have been better. There are several suggestions that inspire highly engaged and constructive conversation and garner support among the group. The manager takes notes throughout and shares how useful and inspiring the conversation has been. They conclude the meeting by sharing that they will consider how to implement the suggestions and they thank everyone for attending.

Six months later, you realize that you have not received any communication from the program manager about how your feedback was utilized, if at all. At your next appointment, you recognize that improvement ideas that were well-supported during the meeting have not been implemented. You wonder if your participation at the meeting actually influenced anything. You recall the motivation and validation you felt when sharing your experiences with other patients and program staff, how the group “broke the ice” and bonded over how great the muffins were, and you cannot help but feel disappointed.

Tokenism and patient engagement

This story of the “muffin meeting” serves as a metaphor to consider some of the ways in which PE can become tokenistic. A “muffin meeting” can be understood to be a meeting of patients and healthcare actors under the auspices of enacting and achieving the benefits of PE, where the actual experience of participation, rather than tangible outcomes in the form of change, becomes the primary outcome itself. It illustrates that PE can possibly lead, not only, to a lack of action and follow-up, but also to feelings of not being valued or taken seriously for patients. Patients who have been involved in engagement activities have identified these, and other, negative experiences themselves, ¹¹ contributing valuable insight to the recognition of tokenism as a major pitfall to avoid in PE.^1,7

First articulated and utilized in the 1960s, tokenism is defined as the difference between the empty ritual of participation and having the real power needed to affect the outcome of a process. ¹² Tokenism has been utilized in discourse about PE to describe many of the ways it can potentially go wrong.^1,13 Moreover, attention has been paid to identifying specific examples of tokenistic aspects of PE, including in the methods and structures used for PE, the intents for particular PE efforts, and the ways relationships are built within PE activities. ⁷ This positioning of tokenism as a fundamental barrier to PE is a critical concept and challenge for healthcare organizations and leaders. While leaders do not likely seek to initiate PE efforts with the explicit intent to tokenize users of their services, the fact patients participate in tokenistic PE should inspire critical reflection: where does tokenism in patient engagement actually stem from? How can leaders avoid planning a “muffin meeting”?

While building awareness of tokenistic actions in PE can be instrumental in avoiding them, perhaps just as important is recognizing the underlying forces that shape a particular context that could enable tokenism to emerge. In this sense, the second part of the initial definition of tokenism becomes critical. This article seeks to bring attention to the concept and role of power as a fundamental element of tokenism in PE. It is critical for health leaders to consider not only examples of tokenistic PE, but also the ways in which power and unequal access to power within the context of PE contributes to the unconscious potential for, and development of, tokenism in the first place.

Power and knowledge in healthcare

While efforts have been made to bring attention to the importance of power in the context of PE and the need for healthcare actors to recognize and attend to imbalances of power,^2,14 deeper analysis of various philosophical conceptualizations of power could be valuable to health leaders seeking to better understand and navigate it within PE efforts.

One conceptualization relevant to this discussion is biopower. First articulated by philosopher Michel Foucault, the concept of biopower, or power over life, holds that power is located in the epistemological systems and enacted within the institutional settings that exist at a given time in history.^15,16 Rather than being an instrument of power, knowledge is constitutive and inseparable from power. ¹⁷ Foucault described power as typically residing in medical structures, institutions, and discourses, ¹⁸ where knowledge of what is normal for human bodies creates and reinforces norms for what constitutes “health.” These norms, or socially acceptable understandings of health, are exerted through institutions in the name of the social good. ¹⁹ Biopower is not simply power exerted by institutions down onto society. For Foucault, power is also exerted by individual actors within interactions; for example, between doctors and patients. Through their interactions, individual healthcare actors contribute to the maintenance of institutional norms and practices, ¹⁵ reinforcing unequal relations of power based on knowledge of what is normal and acceptable for a human body. From a Foucauldian perspective where knowledge and power are constitutive of each other, one can draw connections between knowledge enacted within institutions by actors deemed to have legitimate claim to that knowledge and the development of professional dominance and paternalism within healthcare settings. ²⁰

While PE has been positioned as an evolution against paternalism in healthcare,^8,14 it is reasonable to consider how professional dominance continues to complicate the objective of creating equal partnerships between healthcare organizations and patients. Healthcare organizations are highly professionalized and this professionalization creates organizational cultures predicated on “normal ways of doing things.”^4,21 In essence, healthcare professionals hold the technical knowledge needed to deliver care or administer services, as well as the experiential knowledge of enacting those services through the norms of an organization. They understand the system. They know why the system is the way that it is. And they know how to get things done within the system. This knowledge provides professionals with more power to influence change within an organization, positioning them as more dominant than members of the public. ²² The lived experiences of patients, who frequently volunteer to participate in PE efforts, are often not viewed as true expertise and are assigned less importance than the credentialed experience of professionals, for which they receive compensation. ¹¹

Analyzing PE through the concept of biopower, this article proposes that institutionalized biomedical knowledge and healthcare organizational knowledge work to create systems in which power is fundamentally unequal between healthcare actors and the patients they seek to engage. In this sense, PE is often enacted within systems and structures that were not designed for it. These structures limit the capacity for building equal relationships between organizations and patients and risk producing interactions that are tokenistic and fail to achieve their goals. As such, it becomes clear that deeper reflection and effort must be paid to recognizing and navigating structures of knowledge and power for PE to succeed.

Reflexivity for navigating power in patient engagement

This article seeks to provide health leaders with a set of prompts that can be used to reflexively consider how to navigate unequal relations of power in PE efforts. By thinking critically about power, health leaders can begin to ask questions that could help to identify ways to enable interactions that better reflect the goals of PE. These ideas are by no means exhaustive or an attempt to comprehensively undo power imbalances in PE. Rather, they will hopefully inspire an approach to PE efforts that attends to some of the underlying contributors to unequal relations of power.

Conclusion

One article cannot address all philosophies and expressions of power. It is important to acknowledge this article has not discussed other theories of power that are relevant to PE, opting to focus on institutionalized biomedical and organizational knowledge as sources of unequal relations of power. For example, this article has omitted discussing systems of oppression including racism, colonialism, and ableism that further create unequal relations of power in healthcare^15,25 and that have been presented as barriers to PE.^22,26 These and other omissions present further opportunities for health leaders to reflect on additional sources of power and privilege that can impact the relationships and outcomes of PE efforts they initiate.

As PE in Canadian healthcare settings evolves, it is incumbent on organizations and leaders to consider the kinds of relationships they want to develop with users of their services. To achieve the benefits informing broader calls for PE, recognizing the underlying power dynamics that contribute to tokenism in PE and making intentional choices that seek to mitigate them becomes rendered as an imperative facing healthcare organizations and leaders today. As such, this article contends that applying reflexivity to the sources and expressions of unequal relations of power and choosing to navigate them in partnership with patients is a necessary competency that healthcare organizations and leaders must develop to work toward achieving the aims of PE. By calling attention to the importance of the concept of power in enabling tokenism, this article intends to serve as a starting point for putting an end to the “muffin meeting” within PE efforts.