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New Publication Uses DAC’s Primary Care Data Holdings to Support Chronic Kidney Disease Study

In January 2025, Dr. Neda Aminnejad from York University published, Predicting the onset of chronic kidney disease (CKD) for diabetic patients with aggregated longitudinal EMR data, in the journal PLOS Digital Health.

This paper stems from a collaboration between DAC, the Fields Institute Centre for Quantitative Analysis and Modelling (Fields-CQAM), and the Vector Institute for Artificial Intelligence. The three organizations held a two-day workshop in June 2019 intended to examine the feasibility of using DAC’s National Diabetes Repository (now Diabetes Research Connect) for AI projects. 

“This workshop provided an opportunity to link mathematicians from Fields and AI researchers from Vector to diabetes researchers at DAC in order to collaborate in a meaningful way to provide new insights into the prevention, detection and treatment of diabetes,” explains Conrad Pow, Senior Lead for Digital Health at DAC.

Aminnejad was a participant and led a project for Fields-CQAM at the workshop. Her subsequent study leveraged DAC’s primary care data holdings to develop a predictive model for identifying the risk of CKD in those with diabetes.

“With CKD affecting millions globally, early identification can make a significant difference in patient care and long-term outcomes,” says Aminnejad. “By analyzing de-identified electronic medical records (EMR) from the repository, our research team implemented a machine learning model capable of predicting CKD onset six months in advance with high accuracy. The model highlights critical risk factors, including kidney function markers, duration and diagnosis age of hypertension, diabetes, and osteoarthritis, as well as hemoglobin levels. These insights can support clinicians in proactive risk assessment and timely intervention.”

Aminnejad received one of three DAC Inaugural Grants to use DAC’s platform, allowing her team to do this important work.

“The National Diabetes Repository provided a comprehensive and well-structured dataset that enabled us to build a powerful predictive tool,” she says. “The secure and efficient access to real-world patient data was invaluable for this research. This study underscores the importance of data-driven healthcare and how research collaborations with Diabetes Action Canada can lead to meaningful advancements in diabetes management and patient outcomes.”

The National Diabetes Repository has now been transformed into a new platform that provides researchers access to over 1.8 million patients with all chronic condition. Diabetes Research Connect.

Learn more about Diabetes Research Connect.

Story by Krista Lamb

Knowledge Mobilization Team Launches KMap Tool

In the summer of 2024, the DAC 2.0 Knowledge Mobilization-Implementation Science (KM-IS) Program team undertook a review of the overall program and its tools and resources. This mid-point review inspired several updates, including a revision of the KM planning tool to optimize its user-friendliness.

Now called the KMap Tool (Knowledge Mobilization Action Planning), the new name reflects the tool’s role as a “map” that guides the user as they move through various steps in the journey to create a KM plan for a particular project. Each of the five steps includes a description and examples, with additional guidance tips offered for some of the steps. A worked project example is also provided to illustrate considerations for each step and what a completed KM plan table looks like.

“The ‘map’ analogy was intentional as the tool serves to provide a structured roadmap to systematically think through important questions about your research and KM goals when planning for knowledge mobilization,” says Julie Makarski, co-lead DAC 2.0 KM-IS Program.

This new version of the tool now includes an introductory page with pertinent information about the tool and how to use it. The KMap Tool is available as a fillable document, to facilitate its completion and editing by multiple team members. It can be completed as a team or initiated by one team member and then circulated to the team for continued refinement. The KM plan that is generated can then be used as a blueprint to execute the KM activities outlined in the plan and is appropriate for a grant application or existing research project.

“Planning for knowledge mobilization involves preparation, intention, and action, and if done early during the design stage of research projects, can optimize both the dissemination and application of research results and outputs,” says Monika Kastner, Scientific Co-Lead for the DAC 2.0 KM-IS Program. “The KMap tool guides users to create a comprehensive KM plan, which can then be used to execute their KM activities.”

The KMap tool debuted at the November 2024 Diabetes Canada Pre-Conference workshop, where it was very well received. Workshop attendees were provided the opportunity to apply the tool using an example project and rated the tool highly for clarity and ease of use. All attendees indicated that they would use the tool for their work and would recommend it to others. 

Looking ahead, the KM-IS Program will be offering a live webinar about the tool on February 6, 2025 from 1:00-2:00pm(EST). The webinar will provide information about KM planning for both pre-clinical and clinical research projects, a walk-through of the KMap tool, and tips for writing the KM section of grants. Save the date! Webinar registration will open in January 2025.

Visit the KM Practice Tools page to try the KMap Tool!

DAC-Supported Projects Receive Grants

The entire team at Diabetes Action Canada (DAC) is thrilled to celebrate that eight out of the ten research projects funded through the CIHR Operating Grant: Knowledge Mobilization in Diabetes Prevention and Treatment received our support!

Of these projects:

“We are thrilled to see CIHR funding projects that recognize the vital role of Patient Partners in Knowledge Mobilization”, says Tracy McQuire, Diabetes Action Canada’s Executive Director. “We look forward to working alongside these teams to help move this important research to action and impact.”

The funded projects are:

Congratulations to all of the funded teams!

Learn more about DAC’s Knowledge Mobilization Consultation Service and Practice Tools.

Knowledge Mobilization Team Revamps Program Services

The summer of 2024 was a time for refreshes for the DAC 2.0 Knowledge Mobilization-Implementation Science (KM-IS) team. Having reached the mid-point of the four-year term, the KM-IS Program leads reflected on successes and opportunities to update and enhance current offerings and to build further resources.

As part of this enhancement, the team has replaced the KM-IS Consultation Service’s original “Needs Assessment Survey” with a new, streamlined “Request for Consultation” form that takes about five minutes to complete. This new form helps to initiate the subsequent one-to-one consultation meetings.  

The KM-IS team also clarified that the consultation service can be used for both research project-specific requests and general requests for support. The service is available for ALL members of Diabetes Action Canada, including our researchers, trainees, patient partners and other partners.

“We’ve received great feedback from consultation service users to date. We just want to make sure everyone is both aware of the service and that it is open to all DAC members for any KM-IS-related topic or support need,” says Julie Makarski, Co-Lead of the DAC 2.0. KM-IS Program.

“We always say that knowledge mobilization is not a “one-size fits all” approach,” says Dr. Monika Kastner, Scientific Co-Lead for the DAC 2.0 KM-IS Program. “In the same philosophy, the KM-IS consultation service provides tailored and customized support for each user and their specific project and KM needs. Regardless of the research project topic (pre-clinical, clinical), objective, stage, or the nature of the service request (e.g.., project-specific or a KM-IS question in general), we are here to help. We aim to understand your KM-IS needs and ensure you have all the support and information to maximize the potential reach and impact of your research.”

The team is also committed to supporting those with less experience with or understanding of KM-IS, noting that instruction through consultation and ongoing learning remains a core aspect of the program overall.

“We created this service to meet the individualized KM-IS needs of its users and to provide customized support. We recognize that individuals will have varying levels of knowledge and experience with KM-IS, and that’s just fine; we hope that in using the service, users will not only have their KM-IS needs met for their specific requests, but will also gain some knowledge as they build their capacity in KM-IS,” says Makarski.

Learn more about the KM-IS Consultation Service.

Use of SGLT-2 Inhibitors in Adults (Age 65) with Type 2 Diabetes and Cardiovascular Disease is Lower in Alberta and Manitoba than in Ontario (2018-2020): A Cross-Sectional Study of Different Drug Funding Policies

Use of SGLT-2 Inhibitors in Adults (Age 65) with Type 2 Diabetes and Cardiovascular Disease is Lower in Alberta and Manitoba than in Ontario (2018-2020): A Cross-Sectional Study of Different Drug Funding Policies.

McCreary ML, Yeung RO, Manca DP, Greiver M, Singer AG, Lau D.Can J Diabetes. 2024 Sep 18:S1499-2671(24)00181-3. doi: 10.1016/j.jcjd.2024.09.003. PMID: 39303780

This study examines the lower utilization of sodium-glucose cotransporter-2 (SGLT-2) inhibitors in adults aged 65 and older with type 2 diabetes and cardiovascular disease in Alberta and Manitoba compared to Ontario, exploring the impact of different drug funding policies on medication access. The findings highlight regional disparities in access to life-saving diabetes medications. Diabetes Action Canada supported this research by providing access to the NDR, promoting policy analysis and advocating for equitable access to diabetes treatments across Canada.

New Publication Looks at Harnessing Technology to Improve Diabetes Care

In the latest issue of the Canadian Journal of Diabetes, Diabetes Action Canada’s Digital Health team published an editorial looking at the ways that technology can improve diabetes care.

The publication, The Intersection of Informatics and Diabetes: Harnessing Technology to Improve Care, is an important reminder that digital solutions are being adopted quickly and can be used effectively to support those living with diabetes.

Authored by DAC team members Dr. Alexander Singer, Dr. Braden O’Neill and Conrad Pow, the editorial noted that DAC’s National Diabetes Repository, “Facilitates interprovincial comparisons, which is a critical consideration in Canadian health research…Furthermore, all projects using the NDR are co-created with patient partners who make up 50% of the Research Governing Committee. Patients have a direct say in project approvals to ensure that any proposed research work is done in the best interest of those living with diabetes. The NDR was the first scalable, national diabetes data platform in Canada that enables community-based participatory research.”

Learn more and read the paper now.

DAC Knowledge Mobilization Consultation Supports Successful Grant Application

In 2023, the Diabetes Action Canada Knowledge Mobilization (KM) Consultation Service launched. The program, led by Dr. Monika Kastner and Julie Makarski, is designed to help research teams successfully integrate KM tools into their projects.

Knowledge mobilization helps move research from idea to implementation, and is an incredibly meaningful part of the process.

That’s why the DAC team is thrilled to announce the first funded research project to come out of the consultation program. Dr. Osnat Melamed from INTREPID Lab at the Centre for Addiction and Mental Health in Toronto worked with the DAC KM team on her grant, Helping Women with Diabetes Quit Smoking: A Gender-Informed Approach to Brain Health, which was recently funded by the Canadian Institutes for Health Research Knowledge Synthesis and Mobilization Grants on Brain Health and Reduction of Risk for Age-related Cognitive Impairment 

Melamed is a family doctor whose practice focuses on addiction and smoking cessation. Her research works on ways to help smokers quit, as well as to adapt smoking cessation treatment to meet the needs of specific groups. “In Canada, around 12% of adults still smoke. And those who do tend to come from socioeconomic-disadvantaged populations. Individuals who smoke often face mental health challenges which interfere with quitting success,” she explains. “My research looks at how we can tailor smoking cessation programs to meet the needs of specific groups for whom quitting proves difficult.”

One such group her team is focused on is women. Programs to help people quit smoking often don’t differentiate between the barriers that women may face compared to men, or the unique reasons they may have started to smoke in the first place. Tailoring smoking cessation support for women may improve their odds of quitting.

Her team is also investigating how type 2 diabetes and mental health or addiction issues make quitting more challenging . “This grant looks at tailoring treatment for smoking cessation for women with diabetes. We did the calculation that in Canada there are probably more than 200,000 women with diabetes who also smoke,” she says. Knowing that smoking with diabetes increases overall risk for heart attacks, strokes, dementia and other complications, it seemed wise to work on a tailored approach to help women managing both. “Hopefully helping them quit smoking with a women-specific approach could also improve their diabetes control and prevent some of these adverse outcomes.”

The plan is to look at the research literature to find women-specific programs that are available for smoking. Then, the team will look for ways to tailor this further for women with diabetes through consultation with Patient Partners and a multidisciplinary research and clinical care team.

Knowledge mobilization will be critical to the success of this project, so Melamed was eager to work with the DAC KM team to ensure all elements were considered from the start. “Many of us researchers, we know some things about knowledge mobilization, but we are rarely experts. It’s a science in its own right. Having the opportunity to sit down with a person who has this knowledge and expertise and has supported previous grants to really explain the breadth of things you could do for knowledge mobilization was fantastic.”

For Melamed, this consultation helped her see where she should consult potential users ahead of starting her project to ensure what she was hypothesizing was something that was actually helpful to the expected end user. This, she explains ensures that you don’t work on something for a year only to have the people you want to support find the project confusing or unhelpful. “
“Integrated knowledge translation basically says that if you want to have greater uptake of your research output, you need to really get everyone to the drawing table right from the beginning and design your product or your solution in a way that’s tailored to the needs of this population.”

The consultation process, she says, gave her a lot of clarity about the ingredients she would need for her grant, and also for the end product to be successful. She loved that the process was not just a one-off conversation. Melamed had two meetings with the DAC KM team and then was able to go back and forth with emails throughout the process—allowing her to ask questions whenever she needed to clarify something for her grant application. “It improved my understanding as a researcher, and it helped my grant because I could show that we’re doing to do this great research, but it’s not done in isolation. It’s not siloed. It’s going to be done in collaboration with a lot of people.”

The DAC Knowledge Mobilization Consultation Program is available to all researchers and trainees in our Network. Learn more!

Story written by Krista Lamb.

Building capacity for involving older adults, caregivers and partners in research Workshop

On October 26, 2023, our Knowledge Mobilization team partnered with the McMaster Collaborative for Health and Aging to present a workshop aimed at educating and supporting those wishing to use the principles of patient-oriented research in their work with older adults.

The event, Canadian Association of Gerontology 2023: Community Engaged Teaching, Research & Practice Pre-Conference Workshop, focused on “Building capacity for involving older adults, caregivers and partners in research.” The workshop, held in Toronto, outlined ways to go from theory to practice when working with Patient Partners. Older adults were included in all elements of the event, including as co-presenters.

“The general consensus is that engaging lived experience is important, and this workshop provided the practical how to’s for that,” said Julie Makarski, Diabetes Action Canada’s (DAC’s) Knowledge Mobilization and Implementation Science Research Manager.

Participants at the event received not only helpful information, but also resources for tangible ways to include patient partners. “There were varied levels of experience with partner engagement across participants, so folks were able to co-share and learn from each other,” says Makarski.

Many of the older adults who participated were very engaged by the event, says Soo Chan Carusone, Managing Director for the McMaster Collaborative for Health and Aging. “People were really inspired by learning from the diverse range of folks who participated. There was diversity in lived healthcare experience and in education levels, in terms of research involvement.”

In looking at the evaluations, Isabella Herrington, Research Assistant for DAC’s Knowledge Mobilization program, was pleased to see that respondents were now more open to working with patient partners. “Assumptions around patient partner engagement had been challenged and it reformed what engagement could look like for them.”

As one participant wrote in the feedback survey in response to an “a ha moment” they had during the event: “Watch your preconceived notions and assumptions.” Another noted that their feelings about people with dementia being able to participate in research had been changed.

For the five older adult participants and DAC Patient Partner Ron Beleno (a caregiver participant), there were other learnings. “I found out all aspects of the workshop are enjoyable and valuable. The organization, the presentations and the group discussions,” wrote one. Another noted the value in having very engaged older adults as part of the workshop, and in bringing together patient partners and researchers to co-learn together.

For more information on the McMaster Collaborative for Health and Aging, visit their website.

New study looks at essential requirements for the governance of data repositories

In September, a team of researchers led by Dr. Alison Paprica from the Institute for Health Policy, Management and Evaluation at the Dalla Lana School of Public Health in Toronto, and Diabetes Action Canada’s Conrad Pow and Dr Michelle Greiver, published a new paper in the International Journal of Population Data Science. The publication, Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations, included information gleaned from studying Diabetes Action Canada’s National Diabetes Repository, along with 22 other data-focused initiatives. The researchers worked together to identify a list of 15 plain-language requirements that they believe all organizations who work with data about people should address. The 15 requirements have since been incorporated into a Canadian national standard CAN/CGSI 100-7: Operating model for responsible data stewardship.
 
Overall, the team found that the 23 organizations involved in the project had a lot in common when it comes to responsible data stewardship, something Paprica felt was very positive news. “We know that we can use data to increase our understanding of chronic conditions like diabetes, and to use what we learn to improve self-management and treatment, and potentially even prevention. Other studies have shown that members of the public want health data to be used for research, but they also have concerns about privacy and data being used for purposes they don’t agree with. Our paper presents concrete examples of responsible data stewardship practices and guidance on how data-holding organization can communicate their trustworthiness without providing an overwhelming amount of technical detail.”
 
For many, the use of data to help find solutions for health concerns is an exciting prospect. Knowing that data is being handled and shared appropriately can help ease minds as policymakers consider how available this information should be. “There is a tremendous opportunity to improve health and health care with data,” says Paprica, noting that unlike breakthrough health discoveries based on clinical trials, studies that only use data can yield large-scale improvements without exposing people to experimental treatments
 
“If we can show we are responsible stewards of that data, I think we will have public support to use it for more purposes. The knowledge that can be learned from data that are routinely collected is there for us to find. It’s just really important that we’re responsible data stewards, and that we earn people’s trust in terms of how we govern, manage, and use the data. Addressing the essential requirements that our research team identified is a way to demonstrate trustworthiness,” she says.
 
Moving forward, the team would like to expand the project to examine the processes of more organizations, including for-profit companies. Over the next few months, Paprica and her team will be reaching out to companies in the private sector who have data repositories. They are hopeful that, through these conversations, they can identify practices that will increase transparency and trust when companies use the data they collect. It’s more than just communicating what is legally required; it’s about having data-holding organizations proactively publish information in a format that helps people understand what’s happening with their data.
 
Learn more about the Diabetes Action Canada National Diabetes Repository
!

Factors Associated With Attainment of Glycemic Targets Among Adults With Type 1 and Type 2 Diabetes in Canada: A Cross-sectional Study Using Primary and Specialty Care Electronic Medical Record Data

Factors Associated With Attainment of Glycemic Targets Among Adults With Type 1 and Type 2 Diabetes in Canada: A Cross-sectional Study Using Primary and Specialty Care Electronic Medical Record Data.       

Weisman A, Brown R, Chu L, Aronson R, Perkins BA.Can J Diabetes. 2024 Feb;48(1):44-52.e5. doi: 10.1016/j.jcjd.2023.09.001. Epub 2023 Sep 16.PMID: 37717631

This article explores factors associated with the attainment of glycemic targets among adults with type 1 and type 2 diabetes in Canada, using electronic medical record data from both primary and specialty care settings. It identifies key clinical and behavioral factors influencing glycemic control and provides recommendations for improving diabetes management. Diabetes Action Canada supported the study by funding this study through OSSU and advocating for the use of electronic medical records in diabetes care to enhance treatment strategies and outcomes.