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Wayne Gerber has a complicated health history. He was diagnosed with Type 2 diabetes at age 42 and went on to develop chronic kidney disease (CKD). Gerber eventually became dialysis dependent, and when he was in his mid 50s, was put on the kidney transplant list.

Like many patients with chronic kidney disease, Gerber developed heart problems and was taken off the transplant list until he was deemed healthy enough to undergo heart surgery. He received a triple bypass in 2018 and a kidney transplant in 2019.

Now 69 years old, Gerber’s health is much improved, and although his journey through the health care system wasn’t easy, he has gained valuable insight from his experiences.

• Photo above: Patient research partner Wayne Gerber and UCalgary researcher Matthew James speak at the Baay Chair Conference in May 2022. The duo are working together on a web-based tool designed to help chronic kidney patients and their health-care providers make personalized decisions on kidney and heart health.

Gerber is now using his knowledge to help improve outcomes for individuals with CKD and heart disease as a patient partner in a research project that is aiming to bring software to the clinic that will help patients and their health care team make shared decisions.

“Having gone through my own health-care process, I have a number of recommendations about making the experience [of CKD treatment] better for patients,” says Gerber. “One thing I would have loved is to have more information about possible side effects from medications, what to expect after procedures, and what type of dialysis to choose.”

Dr. Matthew James, MD, PhD, a kidney specialist and researcher at the Cumming School of Medicine, is co-leading the collaborative project alongside Dr. Stephen Wilton, MD, MSc, and the Alberta Provincial Project for Outcomes Assessment in Coronary Heart Disease (APPROACH).

The team recently received Canadian Institutes of Health Research (CIHR) funding through a Can-SOLVE CKD Network Knowledge Mobilization grant.

The grant involves nine project teams from across Canada and is led through the University of British Columbia. In Calgary, the APPROACH team has developed a web-based computer program for shared decision-making in clinical kidney and cardiovascular care.

“This tool is meant to help patients with chronic kidney disease and their health-care providers make personalized choices,” says James. “Having input from our patient partners throughout the research process was critical in the development of this shared decision-making aid. It’s important to provide the information that meets patient and health-care provider needs when facing these decisions.”

The project was identified several years ago as a top research priority by individuals with CKD across Canada. Phase one included an investigation of the experiences of patients and the development of predictive models to produce personalized risk estimates under different treatment options.

The statistical modelling was based on data from thousands of Albertans with CKD treated for heart disease in the APPROACH registry, along with results from randomized trials.

The tool provides personalized benefit-risk information for patients with CKD making decisions about tests and procedures related to heart health. Using this information, patients and their health-care providers can make an informed decision about which treatments may be best for them.

It’s an important tool because many patients with CKD have unique health considerations and often have comorbidities. Not only are they at an elevated risk of developing heart disease, but they may also be at risk of further kidney injury from interventions like angiograms, angioplasties and surgery. James says: 

The shared decision-making tool is designed to define the treatment options, provide individualized risk and benefit estimates, show how the different treatment choices impact those risks, and help identify a choice that best aligns with a patient’s values and preferences.

According to James, it’s critical that the tool the team develops is relevant for patients and meets their needs in a practical way. That’s why patient partners, like Gerber, have participated in all aspects of the research and development of the project.

“We have very intentionally turned to patients to guide the work,” says James. “Patients have brought forward many insights along the way and the products are much more patient centred as a result. I am sure that engaging patients in the research process will continue to be incredibly helpful in the next phase of testing the tool.”