Author: Macenzie Rebelo

Al works as a heavy-haul trucker, is a husband, and a father of two teenagers. Al is an advocate and patient partner with Diabetes Action Canada and Obesity Canada, as he hopes to help all people whose lives are touched by disease. Al and his wife both live with type 2 diabetes and obesity, and both have a “loved” experience with their own fathers.

Al’s Call-to-Action: To improve care systems without losing humanity, by choosing curiosity over judgment and remembering there is always another side of the story we haven’t heard yet.

What surprised me, second only to my alarm clock, was the idea that recognising humanity can sometimes feel like a luxury.

Many cultures around the world seem to share some of humanity’s most challenging traits without any coordinated effort at all. Stigma and judgment appear to be nearly universal.

Yet we can push back against them by sharing what works by bringing together people who have lived with and cared for those affected by these conditions, learned valuable lessons through experience, and are willing to share their knowledge with others.

None of us asks for a disease, yet it often arrives uninvited, unwelcomed even, changing the course of our lives. In response, communities form to offer support, connection, and understanding.

What we do welcome: the chance to bring together people who have lived through these experiences, learned valuable lessons along the way, and are willing to share their knowledge to help others navigate similar journeys.

At the End Diabetes Stigma Global Summit, attendees had the opportunity to hear from people living with and supporting those who live with HIV, who spoke candidly about stigma and the lasting effects of assumptions made about their behaviour, choices, and identity.

For me, there is no greater privilege than sharing a stage with people who advocate for communities affected by highly stigmatised conditions and who work tirelessly to create understanding and change.

It seems obvious, yet many of us have been exposed to false narratives about certain conditions that lead us to believe we know “the kind of person” who gets sick. But the people I have met tell a different story. They are compassionate, resilient, hardworking, and dedicated individuals. The stereotypes we hold rarely reflect reality, yet it can be easier to hide behind them than to confront a difficult truth: illness does not discriminate, and no one is exempt.

When a disease becomes synonymous with a behaviour, or a subculture or a vocation, it drives more stigma into those living with it and weaves bias into the collective consciousness of societies.

Labels and judgments can begin to speak for a person before they ever have the chance to speak for themselves.

After listening to people share their experiences, especially those who lack reliable access to care and medication, I realised how much I had yet to learn. I was immediately struck by the number and scale of challenges that exist beyond those I had already recognised.

It was powerful to hear from someone living with little to no access to insulin, yet who spoke with compassion rather than judgment. Their perspective left me reflecting on how, in places where medicine and healthcare are comparatively accessible, it can be easy to overlook the gaps that still exist.

As members of the panel and audience shared their experiences, a common theme emerged: when resources are limited, empathy and care become some of the most valuable things people can offer one another. Their stories were a reminder that while access to treatment is essential, compassion is equally important in supporting those living with chronic conditions.

I came up with this postulation:

The closer we are to “good care,” the more room there is for judgment.  Judgement without context. Judgement without knowing the other side of the story. But that space could just as easily be replaced with empathy, compassion, and insights.

We shouldn’t need to strip back what is already adequate to continue improving and to offer additional support to patients.

As with any summit or conference, some of the most meaningful moments happen between sessions. 

Strong relationships between individuals and organisations help build meaningful connections that support collaboration, shared learning, and collective impact.

My personal goal was to make ten connections and follow up with each person in the weeks following the summit. 

I’ve done some of that, though I know I still have to be more intentional about it. Even so, I have continued to communicate with many people I knew before, and after the summit, I hope those relationships continue to grow and that others do the same.

Returning at the end of Saturday, we were treated to performances from talented folks from all walks of life. Dance, music, song, comedy, poetry, and spoken word were all part of the evening presentations.

Combined with a fashion show representing many different cultures around the globe, these celebrations of who we are as individuals are a great opportunity to showcase how much more we are than our diagnosis or personal and professional roles. It opens a window into the humanity that is often hidden by “business casual” and “professional presentation.”

Perhaps that is the challenge moving forward. No, simply improving care, but making sure humanity is not lost within it. If we want better systems, maybe we can begin by choosing curiosity over judgment and remembering that there is almost always another side of the story we have not heard yet.

Alex St. John is a PhD candidate in Physical Activity Sciences at Université de Montréal, where his research focuses on exercise and blood glucose management in people living with type 1 diabetes, a condition he has navigated himself for over 13 years. Based between Ottawa and Montréal, he is a Diabetes Action Canada Research-to-Action Fellow and a competitive strength sport athlete.

Alex’s Call to Action: Move beyond token patient engagement and embed patient partners as equal collaborators throughout the entire research lifecycle, ensuring lived experience helps shape research priorities, decisions, and impact.

At recent conferences, I’ve been intrigued by how people with diabetes introduce themselves. Often, there are two introductions in the same sentence: first the credentials, then the diagnosis.

The order and the pause between them feel intentional. It captures what brought hundreds of people together at the Global Summit to End Diabetes Stigma in Jaipur, India. Who gets to speak for diabetes, and from where?

I attended the Summit as a Diabetes Action Canada Research-to-Action Fellow, and as someone who has lived with type 1 diabetes for over 13 years. Those two identities collide every time I draft a protocol, write a grant, or step up to a microphone.

My time in Jaipur sharpened my sense of how often the research enterprise still treats them as separable.

Five Levels of Patient Partnership

Patient partnership is having a moment in health research. Canadian Institutes of Health Research (CIHR)’s Strategy for Patient-Oriented Research, Diabetes Canada’s funding expectations, NIHR’s standards in the UK, and PCORI’s model in the US have all helped build an institutional architecture for engagement.

But a patient partner can describe very different roles depending on where in the research lifecycle the partnership happens. In practice, it operates at five distinct levels.

Research Agendas


The most influential level is research priority-setting: deciding which questions get studied at all. The James Lind Alliance pioneered this model in the UK, and Diabetes Action Canada has used it to re-rank research questions submitted by people living with diabetes, caregivers, and clinicians.

The results are often jarring for researchers. Topics that dominate the literature (pharmaceutical efficacy, new device trials) routinely rank below questions about mental health, daily decision-making burden, and access. When you let community members set the agenda, the agenda changes.

Patient Partners on the Grant, Not Just in the Footnotes

The next level is funding. Patient partners now appear on grant applications across most major Canadian and international funders, often as named co‑applicants with dedicated budget lines.

A patient partner who joins in the final week, reviews a draft, and signs a form is not a co‑applicant in any meaningful sense. A partner who helped shape the research question, contributed to outcome design, and will participate in interpreting the results is something else entirely. Funders are beginning to ask more probing questions about how partners were involved, and that pressure will likely increase.

Designing Protocols With, Not For, Patients

Protocol design and study conduct are where lived experience intersects with methodological choices, often with very concrete effects. The Hypo-RESOLVE Consortium, for example, convened a patient advisory committee whose input shaped the project’s definitions of clinically significant hypoglycemia, an upstream decision that influenced every downstream analysis.

Patient partners flag recruitment materials that sound overly clinical and alienating. They redesign consent processes. They tell you that the burden imposed by a proposed wearable schedule is unreasonable. My own PhD work has been stronger for these conversations, even when they slow things down.

Sharing Results with the Communities They Affect

Dissemination is the stage most people see: conferences, abstracts, plain-language summaries, social media. This is where research either reaches communities or remains confined to journals. Patient partners shape what gets translated, how it’s communicated, and for whom. Any research program serious about impact must treat dissemination as co-designed work, not as a phase that begins only after the manuscript is accepted.

Governance and Who Gets to Decide

The slowest (and arguably most consequential) layer is governance: patient advisory councils within clinical research institutes, lived-experience members on research ethics boards, and patient editors at major journals. These structures determine which research questions even reach the preceding four levels. Change here is slow and uneven, but when it does occur, its downstream effects are substantial.

On Occupying Both Sides of the Table

I’m still figuring out how to inhabit these layers. There is a particular discomfort that comes with being asked to represent “the patient voice” in a room where I’m also presenting data. In some rooms, I’m a researcher whose diagnosis is a footnote. In others, I’m a patient whose academic career is. The two framings ask very different things of me. Other delegates in Jaipur described the same tension. One recalled being introduced at a previous conference as a “patient expert,” a phrase that managed to be both elevating and limiting in the same breath.

Lived experience is a form of expertise, and like any form of expertise, it deserves to be paid, credited, and integrated into decision-making rather than displayed. Conferences are at their best when they model this. They’re at their worst when patient-partner panels are scheduled opposite the “real” scientific sessions.

What Meaningful Patient Partnership Looks Like

Here are a few markers I use to assess whether patient partnership in a project is genuinely meaningful:

• Partners are involved before the research question is finalized.

• There’s a dedicated and reasonable budget line for their time.

• They’re named in outputs, including as authors where appropriate.

• They’re present when results are interpreted, not only when data are collected.

• They can disagree with the team, and those disagreements can lead to change.

The absence of any one of these is usually a warning sign.

A Global Tapestry of Partnership and Stigma

What the Summit added, beyond the specific content of the sessions, was a sense of a global tapestry. Patient partnership looks very different in a health system with universal insulin coverage than it does in one where families must ration supplies.

Stigma is shaped by access, by culture, and by who is allowed to speak publicly about their condition. Patient partnership in research is one of the mechanisms we have to keep these realities in the room.

Calls to Action

For researchers: Examine your next protocol and ask whether your patient partners helped shape the research question or merely reviewed it after the fact.

For funders: Keep asking the harder questions and keep raising the cost of tokenism.

For clinicians: Recognize when your patients are also experts — and treat them as such.

For people living with diabetes: Your voice in research is not a favour you do for the field. It is a structural requirement, and it should be paid, credited, and protected.

The Summit ended with a closing plenary and a flight home. The work it pointed toward is the long, slow kind: rebuilding the architecture of research one level at a time, so that lived experience is not a stage we visit but a foundation we build upon.