A new commentary published in Nature Medicine —
“Adults with type 1 diabetes define what matters to them in stem-cell derived islet cell therapy” — calls for a shift in how emerging therapies are evaluated.

The science behind stem-cell–derived islet cell therapy is advancing quickly. Clinical trials are showing promising results, including insulin independence for some participants.

But as this publication argues, the question is not only whether these therapies lower A1c. The question is whether they change people’s lives in ways that matter.

Read the full publication here. 

Stem-Cell–Derived Islet Therapy and the Limits of Traditional Diabetes Outcomes

Stem-cell–derived islet therapies aim to restore endogenous insulin production. Larger trials are underway, and regulatory review is on the horizon.

Historically, diabetes treatments have been evaluated using metrics such as:

• Hemoglobin A1c
• Time in range
• Severe hypoglycemia

These measures are important. But they do not capture what many adults living with type 1 diabetes describe as transformative.

Lower glucose variability matters.

But so does sleeping through the night without fear.

So does no longer planning every meal, every trip, every swim around insulin dosing and device management.

When therapies evolve, evaluation frameworks must evolve with them.

What Adults Living With Type 1 Diabetes Say Matters Most

The PROMISE workshop brought together clinicians, researchers, regulatory experts, and adults living with type 1 diabetes to define meaningful outcomes for stem-cell–derived islet therapy.

Participants described changes that extended far beyond glycemic control:

• Freedom and spontaneity in daily life
• Reduced cognitive burden
• Relief from constant decision-making
• Fewer visible devices
• Less fear during sleep
• Reduced impact on family members

One participant described post-transplant life as “the freedom I never dreamt of.”

These are measurable experiences. But they require intentional tools to capture them.

Without fit-for-purpose person-reported outcome measures, these dimensions risk being invisible in regulatory and reimbursement decisions.

Peter Senior, Linxi Mytkolli and Kitty Shephard pictured at ATTD 2025 PROMISE workshop. 

Diabetes Action Canada’s Role in Advancing Patient-Engaged Cell Therapy Research

Diabetes Action Canada has played a direct role in shaping this work.

Linxi Mytkolli, Director of Patient Engagement at DAC, co-facilitated the PROMISE workshop and is a co-author on the publication.

Peter Senior, DAC member and clinician-scientist, was a leading driver for the workshop and is also a co-author.

Kitty Shepherd and Kathleen Gibson, both DAC patient partners, contributed directly to the discussions at the ATTD Conference in Amsterdam. 

In addition, fourteen DAC patient partners who have received cell transplants submitted written testimonies ahead of the workshop. Their reflections informed the facilitation design and were synthesized into a one-page insight summary distributed to all attendees. These lived experience narratives anchored the conversation in real-world impact.

This patient-engaged approach did not begin or end with a single meeting.

DAC presented this work at d-Data in Chicago last summer.

It was also featured through our Research-to-Action Fellowship at the Diabetes Canada conference in November.

We have dedicated an entire Fellowship project to cell therapy and lived experience, led by Alex St John and Emily Burke-Hall, with knowledge mobilization outputs forthcoming.

Peter Senior and Esther Latres, SVP of Research at Breakthrough T1D, authors of the PROMISE workshop and paper, pictured at dData 2025 in Chicago. 

Why Patient-Reported Outcomes Matter for Stem-Cell Therapy Approval and Access

Regulators must determine whether benefits outweigh risks. If the benefits that matter most to people living with type 1 diabetes are not measured rigorously and consistently, they may not carry weight in formal decision-making.

Measurement influences:

• Regulatory approval
• Reimbursement and coverage
• Health technology assessment
• Access and equity

This commentary calls for:

• Consensus-driven conceptual models of what matters to adults living with type 1 diabetes
• Modern, strengths-based person-reported outcome measures
• Reduced response burden
• Global collaboration to ensure validity and comparability

Innovation in stem-cell biology must be matched by innovation in evaluation science.

Linxi Mytkolli facilitating at ATTD 2025 PROMISE workshop. 

Looking Ahead: Continuing the Conversation on Cell Therapy and Lived Experience

This work continues.

This spring, insights from DAC’s patient-engaged cell therapy initiatives will be shared at the End Diabetes Stigma Global Summit, where Alex and Linxi will present findings from our Fellowship project.

As stem-cell–derived islet therapies move closer to clinical reality, DAC remains committed to ensuring that lived experience shapes how these therapies are assessed, approved, and implemented.

Progress in diabetes care should not be defined by glucose metrics alone.

It should be defined by whether people can live more freely, safely, and fully.

Diabetes Action Canada (DAC) has secured two additional years of funding through the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) program.

This renewal supports the next phase of DAC’s national work to ensure patient-oriented research delivers measurable impact in policy, in practice, and in communities across Canada.

Three Pathways to Impact

At DAC, research is designed to move.

To people — where lived experience shapes priorities and knowledge returns to communities in ways that are usable and meaningful.

To policy — where evidence informs funding decisions, standards of care, and health system planning.

To practice — where research translates into scalable equitable models that strengthen prevention, care, and outcomes.

This means scaling what works, embedding lived experience in governance and design, and ensuring evidence moves into health systems where it can improve care.

Core Platforms and Implementation Programs

Over the next two years, DAC will continue advancing four cross-cutting platforms that anchor the Network’s national impact:

• Patient Engagement, embedding lived experience across governance, research design, implementation, and evaluation.
• Digital Health, enabling registries, data governance, and responsible AI to support real-world implementation and system improvement.
• Knowledge Mobilization, translating evidence into community-ready resources, policy guidance, and scalable models of care.
• Indigenous Health, advancing Indigenous-led priorities through sustained partnership, Indigenous governance, and action on policy and systems change.

These platforms enable implementation-focused programs addressing some of the most pressing challenges in diabetes care:

• Diabetic Retinopathy Screening, improving early detection and access to prevention.
• Lower Limb Preservation, strengthening coordinated pathways to prevent avoidable amputations.
• Older Adults with Diabetes, scaling interdisciplinary community-based care pathways to promote aging in place.
• Mental Health and Diabetes, scaling a Patient Partner co-designed model integrating structured mental health support and digital tools for young adults experiencing diabetes distress.

Together, these initiatives move prevention and complication reduction upstream, address inequities, and are designed from the outset for real-world implementation and scale.

Indigenous Health: Integrated, Indigenous-Led Partnership

Indigenous Health remains foundational to DAC’s mandate.

Through partnership with the Indigenous Diabetes Health Circle and the First Nations Health and Social Secretariat of Manitoba, DAC participates in Indigenous-led policy priorities and systems change.

This work includes contributing to the National Public Policy Circle, advancing efforts to address anti-Indigenous racism in health systems, supporting engagement with Elders and community leaders, and expanding collaboration in Northern and Arctic communities.

Partnership and Leadership

This work is powered through strong and sustained partnership, research leaders advancing implementation science, Patient Partners embedded as true collaborators, and staff leaders innovating across patient engagement, knowledge mobilization, digital infrastructure, governance, and national coordination.

We are grateful to the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research (SPOR) program. We are also grateful to our partners, the UHN Foundation, Research Manitoba, the Children’s Hospital Research Institute of Manitoba, and the Alberta Diabetes Institute for their continued support and collaboration.

This continued funding from CIHR sustains the backbone of the Network; protecting equitable engagement, bilingual capacity, Indigenous partnership continuity, and the paid involvement of diverse communities. These commitments cannot be built on short-term funding alone.

Looking Ahead

The next two years represent an opportunity to demonstrate how coordinated, equity-driven patient-oriented research can create lasting systems impact.

DAC will continue to strengthen partnerships, advance responsible digital innovation, and ensure research informs policy and practice in real time.

Because research only matters if it moves — and at DAC, it does.

For nearly a decade with Diabetes Action Canada, Tom helped push foot care forward, asked the hard questions, and reminded us that real impact takes teamwork and persistence. As he retires from the Network, Tom sat down with DAC Executive Director Tracy McQuire to reflect on what he’s learned, what he’s helped shape, and the questions he’s carrying into this next chapter.

Some people change a network with a big, sweeping idea. Tom Weisz changed ours by doing something quieter and often harder: showing up, staying curious, and refusing to let important work stall at “good conversation.”

Tom has been part of Diabetes Action Canada (DAC) since the early days. As he steps back from his formal Patient Partner role, we wanted to pause and say thank you not just for what he contributed, but also for how he contributed: with humour, honesty, and a steady insistence that knowledge only matters if it leads to action.

“Knowing without acting is effectively meaningless.” – Tom Weisz

What brought Tom to DAC

Tom did not come to patient partnership looking for a title. He came because someone challenged him not to waste what he had learned.

Just before he retired from his professional career as a podiatrist, a nurse colleague offered a piece of advice Tom still carries: do not stop contributing just because you are retiring. Around that same time, he was publishing and presenting on diabetic foot care work that put him in rooms where policy, practice, and lived experience collided.

One moment still makes him laugh: attending a conference, hearing a speaker reference “a small article that sums it up nicely,” and realizing the article on the screen was his. That speaker was Dr. Charles de Mestral, and it sparked a connection that brought Tom into DAC’s growing community.

“Next thing I know, I was involved in this, that, and the other,” Tom said — a classic understatement.

A champion for foot care and the long game of change

Many people across DAC know Tom through his contributions to foot care and lower limb preservation work. He has helped keep the reality of complications on the agenda; not to scare people, but to be clear-eyed about what prevention can protect.

Tom’s approach is direct, grounded, and shaped by experience. He understands how easily diabetes complications can be minimized until they become urgent and how hard it can be to shift systems before that moment arrives.

But he also understands something else: change is rarely a single event. It is often a slow build.

Tom described it like this: you can chip away for a long time and only see tiny changes — until one day, you hit the right point and a whole section finally moves. For anyone who has worked on policy, funding, or practice change, the analogy lands.

A learner by nature — and a connector by instinct

If you ask Tom what stood out most over the years, he does not start with accomplishments. He starts with people.

“Without fail,” he said, “there’s not an individual who I’ve come across… that I wouldn’t love to break bread with.”

Tom talked about how much he learned through DAC, not only about different types of diabetes, but about broader realities that shape health outcomes: the health inequities experienced by Indigenous Peoples, stigma, access, and the everyday barriers people face navigating care. His default setting is curiosity, and he treats “I don’t know” as an invitation, not a weakness.

“Everybody knows something you don’t know.”

That mindset made him a steady presence in patient partnership spaces where DAC teams bring ideas, tools, and drafts to be tested, not just for whether they are “good,” but whether they will actually work in real life.

The role Tom played: the question-asker who sharpened the work

Tom often described himself as not being part of the “organizational” side.  He was not seeking to run processes. Instead, he was the person you brought something to when you needed it pressure-tested.

As a member of the DAC Collective Patient Circle, he valued this group as a safe place for people to disagree, to speak up, and to improve ideas early before they became finished products that were harder to change.

And he noticed something important: over time, people got more comfortable naming what didn’t work, not just what did.

That ability to surface what is missing, to ask the question that unlocks the next step, is one of Tom’s gifts. It shaped projects in visible and invisible ways, including DAC’s Research to Action Fellowship (where his feedback helped strengthen the program design) as well as the Patient Partner Recruitment process.

Tom’s “secret sauce” for patient partnership

When asked what makes patient engagement work, Tom did not give a slogan. He gave a practical recipe:

• Be clear on your target — know what you are actually trying to change.
• Do not insist on one route — there are “a bazillion ways” to get there.
• Do not “hear” the word no — expect it, and keep going anyway.
• Build up the team — you will not do it alone.

He compared it to sport: a good play only works when everyone does his or her part. The “stars” might get the spotlight, but the outcome depends on the whole team.

And he named the truth that patient partners often know best: this work takes time and sometimes progress arrives in bursts after long stretches of slow effort.

Life shifts — and why Tom is stepping back (for now)

Tom is retiring from his formal DAC role due to a shift in health priorities. He shared openly that he and his wife have been navigating long COVID, and that energy is now the limiting factor, not commitment.

As Tom steps back, he is not stepping away from questions that matter. He is turning his attention to a growing and complicated intersection: diabetes and long COVID. For him, the tension is practical—diabetes care often emphasizes exercise, while long COVID can make physical activity unpredictable or impossible. It is a gap he is actively trying to understand, and one he hopes the research community will take seriously and study in depth.

“As someone with diabetes, you’re always told exercise matters for blood glucose. But with long COVID not everyone can exercise. That’s where I’m looking now: what does good care look like when diabetes guidance and long COVID realities don’t line up?”

For Tom, the question is ultimately clinical: what can physicians actually offer; what can they say or do when a person is living with both diabetes and long COVID, and the usual tools (like exercise) don’t apply? He’s hopeful for practical guidance that improves day-to-day health and he is candid about the urgency: he doesn’t want it to take 15 years for emerging evidence to reach the clinic door.

Even as he steps back, Tom’s identity as a contributor has not changed. He still reads widely, follows emerging evidence, and shares articles when something feels important, especially when it connects diabetes with broader health issues.

And while he’s stepping away from committee responsibilities, his message to DAC was simple: he’ll miss the people, and he hopes to re-engage when he can.

Thank you, Tom

Tom, thank you for nearly a decade of partnership, for helping elevate foot care and prevention, for asking the questions that made our work better, and for reminding all of us that progress is only progress when it turns into action.

We are grateful — and we’re keeping a seat open for you.

Calls to action

• Interested in becoming a DAC Patient Partner? Sign-up here
• Learn more about DAC’s Patient Engagement approach and programs.
• Stay connected: sign up for updates here

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Diabetes Action Canada (DAC) was built on a simple idea: research works better when the people most affected by it help shape it. But even with that commitment, we kept asking ourselves an important question, are we really doing patient engagement as well as we could be?

A new paper published in the Canadian Journal of Diabetes takes a deep look at that question. Led by DAC researchers and Patient Partners, Optimizing patient partner engagement and integration in research shares what people living with diabetes told us about what meaningful partnership in research actually looks like and what needs to change to make it work better.

👉 Read the full article: https://pubmed.ncbi.nlm.nih.gov/41386479/

Why we did this study

Diabetes affects millions of people, but the burden is not shared equally. People facing racism, poverty, language barriers, stigma, or limited access to care often experience the worst outcomes. Patient-oriented research is meant to help close those gaps by making sure research reflects real-world needs, but too often, patient involvement becomes rushed, unclear, or tokenistic.

We wanted to move beyond good intentions. We wanted to learn directly from the people doing this work with us: our Patient Partners.

What we did

In 2022, DAC brought together 35 Patient Partners from across Canada (in English and French) living with Type 1 or Type 2 diabetes, and with a wide range of backgrounds and experiences. Through 13 focus groups, participants shared what it’s really like to be part of a research team: what helps them contribute, what makes them feel valued, and what gets in the way.

Two Patient Partners were also part of the research team from the start. They helped design the study, interpret the findings, and are co-authors on the paper, a reflection of DAC’s commitment to research done with patients, not just about them.

What Patient Partners told us

Patient Partners were clear about what meaningful engagement feels like. It starts with being respected, heard, and valued, not just invited to a meeting, but treated as an equal member of the team. It also means having relationships with researchers, being supported, and being able to learn and share knowledge in both directions.

Most importantly, engagement feels meaningful when people can see that their input makes a difference. When research results are shared, acted on, and reach the communities they are meant to serve.

At the same time, participants were honest about where things don’t always work well. Some described confusion about how to join projects or what their role was supposed to be. Others felt overwhelmed by jargon, left out of decisions, or unsure whether their contributions were truly being used.

Living with diabetes adds another layer. Managing blood sugars, complications, fatigue, stress, and stigma can make it hard to commit time and energy, even when people are deeply motivated to give back. Participants spoke about the emotional toll of diabetes, the need for flexibility, and the importance of cultural and language-appropriate support.

A new way of thinking about patient engagement

One of the most important insights from this study is that patient engagement is not one-size-fits-all. What people need before a study begins is different from what they need once a project is underway, or when it comes time to share the results.

Based on what Patient Partners shared, the research team developed a research-stage-specific engagement framework that outlines how patients and researchers can be better supported:

• Before a project – making it easier to find opportunities and be matched to the right work
• At the start – clear onboarding, plain-language project summaries, and defined roles
• Throughout – regular communication, flexible ways to contribute, and shared decision-making
• At the end – recognition, authorship, and feedback on how patient input shaped the work

This approach moves beyond abstract principles and offers practical guidance that research teams can actually use.

How this research shaped DAC’s Phase 2

This study was not done in isolation. The focus groups took place at a pivotal moment for Diabetes Action Canada, just as the Network was preparing to move from its first phase into Phase 2 (2022–2026). That timing meant the findings were not only academic; they were immediately actionable.

As early findings came in, DAC leaders, staff, and Patient Partners used them to reflect on what was working and what needed to change. Clear themes emerged around the need for better onboarding, clearer roles, stronger communication, and more flexible and equitable ways for people to contribute. Those insights directly influenced how DAC designed and strengthened its Patient Engagement Program for Phase 2, from how Patient Partners are matched to projects to how they are supported throughout the research process.

In other words, this research did not just study DAC’s engagement model, it actively shaped it. The framework presented in this paper reflects both what Patient Partners told us and how DAC responded, making Phase 2 more grounded in lived experience, more accessible, and more aligned with what meaningful partnership actually requires.