Author: Linxi Mytkolli

At the end of March, Dr. Catharine Whiteside will retire from her role as Director of Strategic Partnerships at Diabetes Action Canada (DAC). Throughout her nine years with the organization, Whiteside, who was previously Executive Director, has been an incredible leader, colleague and mentor to the DAC team.

Whiteside has had a storied career. She is a clinician-scientist with a special interest in kidney disease who previously served as the Dean of Medicine and Vice Provost Relations with Health Care Institutions at the University of Toronto. She is a founding member of the Canadian Academy of Health Sciences and the former president of that organization. In 2016, she was appointed as a member of the Order of Canada.

Her research interest in kidney disease and diabetes was sparked early in her career, when she realized people with these conditions were rarely offered dialysis because they were considered unlikely to recover. She focused her research program on studying kidney disease at the molecular level in order to better understand what was happening in these cases and how to improve outcomes.

It was after her retirement from the University of Toronto that she was offered the opportunity to lead Diabetes Action Canada. A network focused on diabetes complications aligned with her interests and, after initially agreeing to help with the grant application, she took on the role of Executive Director.

Dr. Gary Lewis, DAC’s Scientific Co-Lead, was thrilled to have Whiteside at the helm and has continued to appreciate the value she brings to the organization. “Cathy has been the best role model anyone could wish for in academic medicine. Her insights into Canada’s healthcare system, her ability to collaborate with a diverse array of public and private partners, her dedication to public service, her experience in planning and building sustainable organizations, her poise and thoughtfulness have all been invaluable to me. It is an understatement that without Cathy’s guidance over the past decade, DAC would not have become the organization it is today,” he says.

In the beginning, DAC was focused primarily on bringing together research teams. This was something Whiteside felt very aligned with, having experience working in the largest faculty of medicine and one of the largest health sciences faculties in North America. That initial work flowed nicely into meetings with government and policy makers, as well as developing strong collaborations with organizations across Canada and beyond.

Following the COVID-19 pandemic, the organization’s focus shifted to patient engagement and knowledge mobilization, changes Whiteside has found exciting. “I think the organization has really emerged with appropriate strength for patient-oriented research and collective impact,” she says, noting that this is a needed shift in research. “Culture change comes with understanding and engaging the experience of people living with diabetes and its complications. I think that’s the greatest learning for all of us. Despite the fact that we’ve worked with patients for years in this context it’s been a big culture change, and I’ve been delighted to see this expansion.”

Whiteside is especially proud of her work with pan-Canadian organizations, like Diabetes Canada, on the Framework for Diabetes in Canada and other initiatives. She has been very focused on growing DAC’s relationships with government and on supporting research programs and projects related to digital health, amputation prevention and improved access to eye screening. All of these projects have the potential to improve outcomes for everyone living with diabetes or at risk of developing the condition.

The future, as she sees it, will involve increased collaboration across the spectrum. Bringing together everyone in the chronic disease space alongside government, academia, community partners and those with lived experience will be essential.

“It’s all about connected care and integrated healthcare. What we’ve learned at Diabetes Action Canada is that those healthcare programs, like the community health centers, that truly integrate care around the individual, including social services, is the model that’s working,” she says. “Being able to collaborate with South Riverdale Community Health Centre has been a real eye opener. That model is certainly a model of success.”

Organizations like the Indigenous Diabetes Health Circle, which deliver care based on communication, education and understanding the ethnocultural basis for being able to work with their community, are essential. “It’s something that our healthcare leaders need to understand, because we are still so focused on acute care and hospital-based care. And I think the hospitals are realizing that they’ve got to collaborate with the community health centers to create the efficiencies and effectiveness of their own programs. If Diabetes Action Canada can fit into that setting in the future, that will be a real success factor for them.”

Whiteside will miss her colleagues at DAC and the work they are doing. She has been so impressed by the team. “I’ve always said that the lean but very expert management team we’ve had is one of the best I’ve worked with. Having the business and management acumen, the digital health expertise, communication expertise and now, of course, the patient engagement element. This has really been a great pleasure for me. Having built a number of organizational management teams, this is, in my view, the best that I’ve ever worked with.”

The feeling is very mutual, “Cathy was instrumental in building the Network from the ground up, shaping its vision, and fostering a culture of collaboration that continues to define our work. Her leadership, expertise, and dedication have been invaluable, not only in establishing critical partnerships but also in mentoring staff and in developing meaningful relationships across the research and patient communities,” says DAC’s Executive Director, Tracy McQuire. “Cathy was deeply committed to building programs that have had a lasting impact, including our diabetic retinopathy screening and limb preservation initiatives. She also played a key role in strengthening partnerships with our NGO partners, particularly Diabetes Canada, helping to align efforts in advocacy, research, and patient care. Cathy’s contributions to Diabetes Action Canada are immeasurable, and her legacy will continue to guide us.”

Even in retirement, Whiteside will not be far from the DAC team if needed but she is excited to spend more time with her grandchildren and as a volunteer for organizations like the Scarborough Health Network and the Banting Discovery Foundation. “DAC is in excellent hands. We’ve built something very successful,” she says.

Read and sign the Kudos Board for Cathy!

In February, a research team led by DAC investigator Melissa Northwood from McMaster University published a paper in the journal BMC Health Services. The article, Readiness for scale up following effectiveness-implementation trial: results of scalability assessment of the Community Partnership Program for diabetes self-management for older adults with multiple chronic conditions, involved DAC members and projects.

“The Community Partnership Program (CPP), an integrated care intervention for older adults with diabetes, was designed with scale up in mind – meaning from the beginning of the research project design, the team wanted to ensure if the program was found to be effective, the study would also assess the scalability of the program to determine the next steps for scale up of the program in Ontario and PEI,” say Northwood. “Failing to adequately consider equity issues and local community needs when assessing scalability could perpetuate or exacerbate health inequities if programs are scaled up without knowledge of their impact across diverse communities.”

In the team’s scalability assessment, health inequities were the focus of many discussions initiated by participants. They believe this was due to the emphasis on health equity and the social determinants of health in the design of the CPP, but also because of the inclusion of patient and public research partners in planning and implementing the scalability assessment process.

“Patient and public research partners played a large role in this project, right from the beginning, in having older adults and caregivers as partners,” says Northwood. “In this phase of the research, six Patient Partners participated in all phases of the project and in the preparation of the manuscript. In particular, they identified several adaptations to improve program acceptability and effectiveness for both older adults and their care partners. We are very grateful to DAC who supported us with connections to Patient Partners and championed this work.”

Northwood’s team is committed to sustaining the collaborative working relationships developed during the trial and will seek further funding opportunities to support the scale-up of the program into usual care of older adults with diabetes and multiple chronic conditions.

Read the article now!

Blindness is one of the most disabling complications of diabetes and is preventable with timely diagnostic screening and early treatment. Diabetes remains the most common cause of blindness in our working aged population and has remained unchanged for many decades. Retinopathy occurs in 25% of persons with diabetes and, unfortunately, many are unaware of the diagnosis until it is too late to treat. Rates of vision loss are highest among those experiencing lowest socio-economic environments, the uninsured and Indigenous communities.

The health system challenge is identifying persons with diabetes who need screening. This must include socio-culturally safe education about prevention and offer of convenient retina imaging, treatment follow up and ongoing surveillance.

By engaging persons who are blind due lack of timely diabetic retinopathy screening, DAC investigators Drs Michael Brent and Valeria Rac co-designed, implemented and evaluated a new data-informed approach to identifying those who need screening. The project was conducted in collaboration with the Ontario Alliance for Healthier Communities, ICES and two Toronto Community Health Centres (CHCs), home of a regional diabetic eye screening program where 17% of clients are uninsured, 76% are racialized and 56% have an annual income less than $30,000. Using CHC electronic medical record (EMR) data linked to provincial billing data for retina image scans, screening according to clinical practice guidelines was analyzed. Using all the Ontario CHC EMR data, 72,000 clients with diabetes were found to be unscreened according to evidence-based clinical practice guidelines. The clients at the two CHCs were identified enabling health professionals to contact them. Once screened, 29% had previously undiagnosed diabetic retinopathy (9% with sight threatening disease).

Many CHC clients were women who, in a qualitative arm of the project, identified multiple socio-economic and environmental barriers for finding time for screening and other aspects of diabetes self-management. Now, the CHCs are developing a call/recall approach for diabetes eye screening using EMR data. With better understanding of their clients’ needs, they are proactively improving social, educational and cultural safety supports necessary for timely screening and prevention of vision loss.

This project also assessed the cost-effectiveness of the CHC diabetic eye screening program and treatment in the most vulnerable, uninsured population, e.g., new immigrants, compared with a no screening/no therapy option. The return on $1 investment on screening and subsequent low cost treatment for retinopathy progression was $26.95, and for high cost treatment was $7.66.

Dr. Rac has acquired a CIHR Team grant to engage 3 other provinces in a similar patient-oriented research data-informed retinopathy screening project paving the way for establishing improved screening to prevent blindness caused by diabetes.

These convincing outcomes for establishing data-informed screening for diabetic retinopathy, including those who are uninsured, were presented to Ontario Health and the Ontario Ministry of Health policy-makers at a Diabetes Policy Roundtable in Sept 2024 co-hosted by DAC and the Ontario SPOR SUPPORT Unit. This DAC data-informed solution is ready to spread and scale within the CHCs and other primary care sites across the province.  As part of a Diabetes Action Plan, Ontario Health is now prioritizing a pathway for provincial diabetic retinopathy screening – a first in Canada.

It is with great sadness that we share the news of the passing of one of Diabetes Action Canada’s (DAC’s) long-standing and dedicated Patient Partners, Pascual Delgado.

Pascual was involved with many DAC committees and programs and a Patient Partner on several projects with the Université Laval. He worked closely with DAC researcher Dr. Joyce Dogba.

“Pascual was a dear colleague and friend. As one of the first Patient Partners within the Network, he played a vital role in shaping our research, collaborating closely with our teams in both French and English across a variety of initiatives. I had the privilege of working alongside Pascual to co-develop the EDI Committee, where he served as co-Chair with a particular passion for supporting research teams in engaging newcomers to Canada in the research process, says Diabetes Action Canada’s Executive Director, Tracy McQuire.

“Pascual was deeply involved in our Network, contributing as an active member of the Steering Council, Workshop Planning Committee, Collective Patient Circle, Francophone Patient Circle, and numerous research projects. Beyond his many contributions, he was a kind and generous person—always the first to recognize others’ efforts, express appreciation, and take the time for a thoughtful conversation. I will deeply miss working with him,” she continues.

Pasqual’s work as a patient partner will continue to have impact and his relationship with the patient-oriented research community will be remembered fondly. “Pascual was such a valued member of Diabetes Action Canada. He is remembered with deep gratitude for his passionate contributions, wisdom and friendship,” says Dr. Catharine Whiteside, DAC’s Director of Strategic Partnerships.

Dr. Joyce Dogba, shares her words of remembrance for Pasqual below.

Il m’est très difficile de te parler au passé, permets-moi de te parler au présent. Tu es une âme si généreuse, un érudit riche en savoir, en savoir-être et en savoir-faire.  Lors de ma première entrevue avec toi en 2015, j’ai toute suite réalisé ton immense apport dans le projet pancanadien portant sur le diabète. Je suis fier de dire que c’est moi qui t’ai invité à rejoindre le réseau DAC.

J’ai encore en mémoire ta réflexion profonde sur l’immigration, l’inadéquation de la société aux personnes et vice-versa. J’ai encore en tête les interminables heures d’entrevue que nous ne voulions jamais terminer, car discuter avec toi c’est boire aux sources de la sagesse comme un disciple ferait auprès de son maître.

Cher ami, où que tu sois reste en paix, tu as un leg précieux dans nos cœurs ici. La science du partenariat patient s’est enrichie grâce à toi.

Merci à la vie de m’avoir permis de te rencontre.

In memory of Roberto Pascual Delgado

Kudos board in memory of Pascual Delgado

In February, a research team led by Dr. Jamie Boisvenue published their findings in the journal Health Expectations. Titled, Developing a Quality Improvement Framework to Enhance the Health System User Experience for Individuals Living With Type 1 Diabetes: The Reshape T1D Study, the paper looks at how user experience design could improve healthcare for those living with type 1 diabetes (T1D).

The study had four patient partners and four clinicians as co-researchers. They used questionnaires and semi-structured interviews to survey 41 adults living with T1D across Alberta. The participants offered feedback that highlighted the need for more equitable, accessible and empathetic care. Suggestions included:

• A centralized hub with consistent and up-to-date education and resources
• Greater flexibility in appointment times
• More choice in who is part of a person’s care team
• Care that reflects the reality of the patient’s circumstances

So far, the reaction to the paper has been positive, with the team noting that people have been very invested in the process and the findings. “The public has been excited to see (1) how exactly their tax dollars have gone to producing great research that has impacted health policy and health systems, and (2) that we have involved people with lived experiences and healthcare professionals throughout the entire research process,” says Boisvenue.

For the research team, the involvement of patient partners has been an essential component to this work. Researchers often ask questions of people with lived experience, but having a person with lived experience co-developing those questions leads to a much improved experience.  “Simply put, this kind of research is not fully possible without patient partnership,” says Boisvenue. “The unique insights from patient partners, drawn from their lived experiences, combined with professional expertise of healthcare providers, has allowed us to uncover phenomena that would otherwise go unnoticed. Their involvement not only strengthens the rigor of the research but also makes the process more meaningful and empowering for me as a researcher.” 

The paper is available online now.