My name is Maxime Lê. I am a person of colour navigating life with a chronic illness and an invisible disability. Some organizations might perceive me as a diversity checkbox and token patient to engage with, but I’m committed to challenging and reshaping that perspective.
Since 2017, I’ve been a patient partner with The Ottawa Hospital and Ottawa Hospital Research Institute, where I’ve seen first-hand what meaningful patient partnership can look like when done correctly. I also serve on the Board of Directors of the Patient Advisors Network and co-chair the Ontario Health East Patient and Family Advisory Council, and earlier this year, joined the Equity in Health Systems Lab as a patient partner and investigator, working with partners to champion more equitable health systems.
Professionally, I am a health communications consultant and am proud to merge my expertise with my patient-partner experiences to offer strategies to clients to bridge the gap between patients and health-care providers and researchers.
I would like to share with you some of the insights I’ve learned in my journey so far. Let’s talk about the transformative potential of patient partnership, what challenges organizations are facing, and how clear communication can reduce barriers and solve problems in patient partnership.
What is patient partnership, and why does it matter?
Patient partnership is a paradigm shift, transforming traditional ideas of patients as passive recipients of health care and research into active contributors to it.
In health care, this collaboration can lead to interventions tailored to individual or community needs, increasing care satisfaction and quality.
In health research, involving patients at every step of the research project ensures that studies respond to patient concerns, address health issues they care about and result in outcomes that are more impactful and relevant.
Institutional challenges around patient partnership
Inaction on elements of the organizational Trust Quotient
The principle “nothing about us, without us,” often echoed by patient groups, underscores the growing demand for genuine patient inclusivity. Yet, many organizations routinely grapple with merging meaningful patient partnership with equity, diversity, and inclusion (EDI) initiatives.
Many organizations grapple with merging meaningful patient partnership with equity, diversity, and inclusion initiatives.
Without proper guidance and action on both, health and research systems risk not only a decline in their reputations but also risk further widening the rift between them and those they aim to serve. I call this the Trust Quotient.
Trust is the bedrock of health care and health research. It’s the unseen bond that connects patients to providers, research subjects to researchers, and communities to health institutions. By actively involving diverse patients as partners in decision-making, policy formation and research processes – especially when valuing and integrating the voices of communities historically marginalized due to systemic biases and medical mistreatment – institutions can demonstrate their commitment to prioritizing all patient voices and experiences while actively working toward rebuilding their Trust Quotient, an important element of organizational reputation.
Challenges in implementation and communication
Many institutions grapple with challenges in implementation and buy-in from their team. Ambiguous definitions, ineffective communication, complex processes, and organizational resistance all contribute to stifling any momentum and excitement for sustaining a culture of patient partnership.
Lack of clarity around terms like “patient engagement” or “patient partnership” can lead to misaligned expectations from both patients and staff members looking to work on patient-centered projects.
I’ve seen organizations struggle to effectively communicate about their patient-partner programs or policies (if they exist). Unclear messaging deters potential participants and can breed skepticism internally as well. Often, joining patient-partnership programs can be a bureaucratic maze, discouraging interested patients and frustrating researchers and staff that want to connect with patients.
Moreover, internal organizational hesitance, rooted in traditional top-down clinical frameworks, often pushes patient voices to the periphery and discounts their experiences instead of embedding them as sources of guidance, evidence and inspiration.
Partner with patients for the future
In my dual role as a health communications consultant and patient partner, I’ve witnessed the immediate impact on the patient experience when clients put in place recommendations to improve their communications and revamp their patient partner programs.
And let me be frank: Organizations that prioritize patient voices while championing equity, diversity and inclusion stand to gain immensely in not only enhancing their reputation among their patient communities, but also in leading the way as models for other institutions to follow.
This will need courage and commitment from leaders and a bold paradigm shift – seeing patients not just as beneficiaries but as invaluable partners in health care and research.
Embracing this perspective leads to richer patient experiences and robust organizational outcomes. It’s a collective triumph for all involved.