Patient-oriented research isn’t only about listening. It is a commitment to recognizing the value of patients’ unique expertise and learning from these experiences to design better research studies.
For Cathy Woods, becoming a patient partner was an opportunity to use the insight gained from her own journey with kidney disease to make a difference in the health of Indigenous people.
In early 2016, Cathy joined a Can-SOLVE CKD project led by Dr. Paul Komenda looking at strategies to improve early diagnosis of kidney disease in Indigenous communities. The initial study design called for a randomized trial in which certain communities would receive screening, triage, and referral to appropriate treatment, while others would receive only education. The creation of “haves” and “have nots” based on the randomized study design was problematic for her.
“I’ve never been a fan of randomized trials,” she says. “To me, it always seemed unfair that someone got a placebo and someone got the real stuff.”
This imbalance struck home. Cathy’s kidney disease—membranous nephropathy—had been caught by her primary care doctor during a routine physical. Having seen first-hand the benefit of timely diagnosis and referral to care, she thought it should be available to everyone, especially those in remote communities for whom access to primary health care is limited.
“People go a long time without realizing that they have kidney disease. I go to northern communities and people talk about things like leg swelling – they just think it’s part of growing old, and I think, ‘Your kidneys aren’t functioning.’ But most of the time, people don’t know because they’re not tested for it.”
Cathy raised her concerns with Dr. Komenda and his research team. They were immediately receptive to her perspective and identified a possible solution. Instead of a randomized control trial, they would use a “stepped-wedge” design in which all study participants eventually receive the screen, triage, and treat intervention. The re-designed study is currently in its start-up phase preparing to roll out in BC, Alberta, and Manitoba.
Cathy hopes her experience will help other patients recognize that their opinions are valued and that they should not be afraid to speak up. Although she was hesitant at first to discuss her concerns with the project team, the researchers put her at ease and treated her opinion seriously and respectfully.
“When we were done, I said to them all, ‘You guys have no idea how intimidating this is to come in and talk about this.’ And Dr. Komenda turned to me and said, ‘Cathy, we learned so much from you.’
“To be spoken about like that and for him to have said that just meant so much to me—that my opinion was valid and that I was an important part of the project.”