Essays

Essays August 2018
Patient Engagement

What have we done? The piths and perils of tokenistic engagement in healthcare

Umair Majid

Patient 

The inclusion of patients as partners in the healthcare system is a commonplace phenomenon. Patient engagement has become an expectation across the board, with the design and incorporation of novel frameworks, supports, and resources to consolidate the participation of patients in the healthcare milieu. Alongside this development, a plethora of research has been conducted on the barriers, facilitators, strategies, and impacts of patient engagement. Although the strides in the patient engagement movement are commendable, issues remain that force us to reconsider the historical antecedents of the patient engagement movement.  

For instance, it appears that the application of patient engagement has, for the most part, preceded its theoretical development, leading to concerns of how and why we engage patients in healthcare. This may be one of the reasons why our efforts to engage patients in authentic partnerships, albeit genuine, have instead been replaced by pervasive tokenism. Tokenistic patient engagement contaminates the healthcare culture because on the one hand, it creates a facade of improved quality of care, on the other hand, it does not confer the plethora of benefits associated with engaging patients in healthcare activities. As a result, there is a strong imperative to revisit the reasons that originally catalyzed the patient engagement movement and examine the processes that have led to the state of the art of patient engagement today. 

History of Patient Engagement

Patient preferences is not a novel concept in the consideration of healthcare. It has always been one of three components (clinical judgement, evidence, and patient preferences) in the original model of evidence-based medical practice. However, patient preferences have only become a prominent consideration in the last two decades. The popularity of patient preferences arose from calls for accountability in healthcare, public mobilization to contest decision-making in public policy processes, and the transformation of healthcare ownership and power from clinicians to patients.

Patient engagement is the ideal for many reasons. On the one hand, patients are consumers of healthcare services in many jurisdictions around the world and ergo have the democratic right deliberate on resource allocation and priority-setting. On the other hand, patient engagement advocates for a patient-centric culture that aligns healthcare activities with the patients and family the system espouses to serve. In turn, healthcare services are tailored to the needs and priorities of patients, there is increased trust between clinicians and patients, enhanced treatment adherence, a more cost-efficient and sustainable system, and improved clinical outcomes.

The State of the Art of Patient Engagement

Patient voice should be a conduit for quality improvement. However, an overemphasis and overproduction of patient engagement initiatives that focus solely on quality improvement may have generated the use of patient engagement as merely a symbol of improved quality of care without the necessary legwork to cultivate a patient-centric culture.

Let us consider first that there are a multitude of ways to improve the quality of care, such as patient safety initiatives, resource prioritization, and patient engagement. Although most of these methods share similarities, they are distinct from patient engagement because they emerge as a result of institutional priorities, objectives, and traditional habits of mind. Patient safety initiatives, for example, were formerly introduced due to the need to prevent adverse events and medical errors. Although driven by patients through litigation, patient safety initiatives have mostly ignored the role of patients in these initiatives because they focus on achieving the mandated objectives of the healthcare institution. On the other hand, patient engagement was triggered from patient and public mobilization to be included in healthcare decision-making.

Traditional quality improvement approaches and patient engagement have emerged from different sources of influence in the healthcare system; the institution on the one hand, and patients and public on the other. This has engendered a tacit, concealed divide between healthcare institutions’ long-held habits of mind and a strong push, from within and outside, to evolve these habits to become more holistic by including patients and public in its organizational structure. This divide may clarify why a patient-centric culture is so difficult to cultivate.

On one side of the spectrum, there is the healthcare institution comprising administrators, decision-makers, and clinicians who have a long history in the healthcare system grounded in professional subcultures. These subcultures may be resistant to any change that forces them to reconsider the very values and beliefs that determine their attitudes, behaviours, and ways of practice in healthcare. On the other side, we have patients and the public, who were passive recipients of healthcare heretofore but are now attempting to change the culture by advocating for their integration.

I believe that the healthcare institution’s efforts to engage in a dialogue about patient engagement with patients and the public, while holding onto their traditional habits of mind, has given rise to the so-called “middle ground” we know as “tokenistic engagement.” This is because, although the healthcare institution has recognized patient engagement as an important solution to many of its systemic problems, it has yet to internalize patients as partners in all healthcare activities.

Moreover, it is extremely difficult to acclimate an additional culture (i.e., patients) with values and beliefs discordant to the normative culture (i.e., the institution and its subcultures). In an attempt to negotiate between these two groups, the healthcare institution employs a false pretense of tokenistic patient engagement instead of fully and authentically integrating patient engagement. The consequences of this approach are tragic because although it appears that we “engage” patients, the healthcare system does not truly integrate their voice in planning and delivery of healthcare services and we squander already constrained healthcare resources in this effort.

To engage should mean positioning patients, and not ourselves, at the centre of the engagement. We need to contemplate on the factors that catalyzed the patient engagement movement, and reflect on the impact of tokenistic engagement on the healthcare system and the patients and family systems we serve.

About the Author

Umair Majid, MSc, MEd, PhD Student

Institute of Health Policy, Management, and Evaluation | University of Toronto

Toronto General Hospital Research Institute | University Health Network

Department of Health Research Methods, Evidence, and Impact | McMaster University 

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