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 Linxi Mytkolli: Shaping the Future of Healthcare Through Patient Engagement 

The healthcare industry is undergoing a transformative shift towards prioritizing patient engagement. More than ever, healthcare systems are striving to be inclusive and responsive to the needs of those they serve. This evolution reflects a broader movement to address gaps in accessibility, representation, and inclusivity, ensuring that healthcare outcomes align with the lived experiences of patients. 

One individual at the forefront of this movement is Linxi Mytkolli, Director of Patient Engagement at Diabetes Action Canada (DAC). Her journey into patient advocacy began with a life-changing health crisis in her mid-20s, leading to a diabetes diagnosis. This experience illuminated the disparities within the healthcare system and inspired her to advocate for patient-centered approaches. Linxi now leads groundbreaking initiatives that ensure patient voices are integral to healthcare research and policy. Her work embodies inclusivity, collaboration, and systemic change. 

DAC, a national network committed to improving diabetes care through patient-oriented research, has been a leader in integrating patient perspectives into healthcare systems. By prioritizing equity and innovative solutions, DAC is driving systemic changes that empower patients and improve outcomes. 

Transforming Healthcare through Patient Advocacy 

Linxi’s advocacy journey began in the ICU, grappling with the challenges of navigating a healthcare system as a patient. Initially feeling isolated, she found a sense of purpose and community through DAC. Starting as a patient partner, Linxi quickly became an advocate for including lived experiences in healthcare decision-making. 

“In advocating for better diabetes care, I found that reducing assumptions, honoring each person’s dignity, and fostering a collaborative spirit could transform outcomes and patient experiences,” Linxi reflects. 

As DAC’s Director of Patient Engagement, Linxi integrates her personal experiences with her professional expertise. Her role involves leading initiatives that turn patient narratives into actionable insights for healthcare innovation. From facilitating focus groups to advising policy, Linxi’s work centers on building systems that empower individuals and value their experiences. 

The Research to Action Fellowship: A Groundbreaking Program 

One of Linxi’s most impactful initiatives is the Research to Action Fellowship, a nine-month program she co-designed to bridge the gap between the diabetes community and research. This fellowship trains individuals with lived or loved experiences of diabetes to co-create knowledge and share research in ways that resonate with their communities. 

“The fellowship isn’t just about producing resources—it’s about transforming the role of patients in healthcare research and advocacy,” Linxi explains. “We’re equipping individuals to lead systemic change in ways that reflect their unique lived realities.” 

Fellows collaborate with organizations such as the National Indigenous Diabetes Association, Obesity Canada, and diaTribe to develop culturally relevant resources, including: 

• Indigenous self-advocacy cards 

• Comics on obesity and mental health 

 Educational tools for Afro-Caribbean and South Asian communities 

In its inaugural year, the fellowship drew over 70 applications for eight spots, representing individuals aged 18 to 75. Over 50% of applicants were from equity-denied groups, with 30% identifying as Indigenous. Fellows receive stipends and funding to attend conferences, removing financial barriers to participation. 

In 2024, Linxi moderated a historic panel featuring the inaugural cohort at the Diabetes Canada Conference. This was the first time a panel featured 100% lived or loved experience, drawing hundreds of attendees and sparking critical conversations about patient-driven solutions. In 2025, the fellowship will be presented at the International Diabetes Federation World Diabetes Congress, cementing its global influence. 

The DAC Hub: Building Connections for Better Care 

Community is an essential enabler of positive mental health and health outcomes—not just for patients but for researchers, healthcare providers, and advocates. Recognizing this, Linxi spearheaded the development of the DAC Hub, the world’s first built-by-community-for-community database of diabetes resources. 

The DAC Hub began as a repository of resources, organizations, and support networks for Canadians living with type 1 diabetes. Today, it has expanded to include all types of diabetes and serves as a global hub. The goal? To make it easier for people to connect with community—whether they are seeking peer support, navigating their disease, or looking for tools to better care for patients. 

“You don’t know what you don’t know,” Linxi explains. “The DAC Hub is a one-stop shop where people can find support groups, resources, and communities. It’s also a tool for providers to offer to their patients and for the online community to promote their services, blogs, and education.” 

Presented at the Diabetes Canada Conference 2024, the DAC Hub will be integrated into a clinical trial in 2025. With a vision of global reach, Linxi envisions the DAC Hub becoming a tool in every provider’s repertoire and a platform that fosters community across continents. 

Addressing the Challenges of Meaningful Patient Engagement 

Despite progress, Linxi identifies significant challenges in the field: 

Tokenization: “Organizations often meet engagement requirements without the infrastructure to do it meaningfully,” Linxi notes. Templates, tools, and training are essential, as are genuine collaborations with trusted entities like DAC. 

Scope Creep: Patient partners are frequently asked to take on professional responsibilities without adequate support or compensation. “While lived experience is invaluable, it cannot replace learned and laboured expertise,” Linxi asserts. 

At DAC, significant time and effort have been invested in building relationships and establishing best practices for patient engagement. Collaborating with organizations like DAC can ensure engagement is conducted with integrity and respect. Addressing these issues requires systemic change, clear roles, fair compensation, and robust frameworks. 

Shaping Healthcare through Advisory Influence 

Linxi’s influence extends beyond DAC, exemplified by her advisory role with Canada’s Drug Agency’s Patient and Community Advisory Committee (PCAC). Serving in this capacity raises questions within the patient community about whether advisory roles can drive meaningful change. Linxi believes they can. 

“Better health outcomes can be achieved through a variety of approaches,” she says. “Advisory roles ensure patient voices are integral to decision-making without undermining policy structures.” 

Linxi leverages her extensive network, including connections with youth, newcomers, and immigrant communities, to ensure diverse perspectives are represented. By fostering open dialogue and maintaining transparency in decision-making, she helps shape policies that meet the needs of all Canadians. Her work demonstrates that advisory influence is a powerful tool for systemic change. 

Guiding Principles for Meaningful Advocacy 

For those aspiring to make an impact in patient advocacy, Linxi shares three key principles: 

Map your 4Ls: Understand the value you bring through your lived, loved, learned, and laboured experiences. 

Build connections: Engage with organizations and mentors aligned with your 4Ls. Be generous with your time, skills, and service. 

Listen deeply: “Find your place by understanding the values and dialects of those around you. True advocacy is rooted in empathy and reciprocity.” 

“These principles have guided my career,” Linxi shares. “Advocacy becomes meaningful when it’s reciprocal, driven by humility, and built on listening.” 

A Vision for Collaborative Patient Engagement 

Linxi envisions a future where patient engagement is infused with joy, sustainability, and mutual respect. This vision includes: 

• Strengthened community relationships: “When you invest in relationships, the results follow.” 

• Support for operational leaders: Recognizing the contributions of those with learned and laboured experience who drive engagement initiatives. 

• Global collaboration: Leveraging tools like the DAC Hub to connect communities and improve outcomes worldwide. 

“We need to call each other in, not out,” Linxi emphasizes. “By fostering collaboration and trust, we can create a healthcare system that truly reflects the needs and strengths of everyone it serves.” 

Linxi’s work exemplifies the power of relationships, creativity, and community-driven approaches in transforming healthcare. From the DAC Hub to the Research to Action Fellowship, her initiatives are shaping a future where patient engagement drives systemic change, and everyone’s voice is valued. 

Diabetes Action Canada (DAC) 

Visit Diabetes Action Canada's official website to learn more about our work in patient-oriented research, improving the health and wellness of people with diabetes, and initiatives led by patient advocates. 

DAC Hub – The Global Community Resource 

Discover the DAC Hub, a groundbreaking resource created by and for the diabetes community. This one-stop platform connects individuals, healthcare providers, and researchers with support groups, educational resources, and tools to navigate diabetes. Designed to foster community and collaboration, the DAC Hub enables people worldwide to share their services, promote their blogs and resources, and find the networks they need. Its integration into clinical trials and global healthcare efforts highlights its impact as a vital tool in diabetes care. 

Research to Action Fellowship 

This page highlights the groundbreaking Research to Action Fellowship, a program designed to empower patient advocates to mobilize research and create knowledge products by and for the diabetes community. 

Patient Advocacy and Thought Leadership Podcasts 

Listen to insightful discussions about diabetes care, mental health, and patient engagement through these podcast episodes, where Linxi shares her expertise and experiences. 

Podcast 1Patient Engagement Podcast Interview about Diabetes Action Canada 

Podcast 2Supporting the Mental Health Needs of People with Type 1 Diabetes 

CADTH Patient and Community Advisory Committee 

Learn more about the Patient and Community Advisory Committee (PCAC) at CADTH, where Linxi is the youngest member. The PCAC represents the diabetes community and ensures patient voices are embedded in healthcare decisions. 

G20 Youth Health Delegate – Advocacy for Global Health Policy 

Read about Linxi’s involvement as the Canadian Health Delegate for the G20 Youth Forum, where she advocated for youth health priorities, mental health equity, and digital health inclusion on a global stage. The link includes the global communique adopted by G20 leaders and a report on the community engagement and EDI strategy and consultations that Linxi led. 

Linxi’s Thought Leadership and Advocacy 

Visit Linxi’s LinkedIn profile to explore her thought leadership, media appearances, and advocacy work in diabetes care, healthcare policy, and patient-centered research.