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The Kidney Foundation and its partners develop tool to help people with lived experience reshape their care by being leaders in research and peer review.  

Many patients and those connected to chronic illness turn to their doctors for medical advice and care, not knowing that they could potentially play a greater role in shaping their own experience and that of countless other patients. Increasingly, those with lived experience are being invited to review research proposals, provide recommendations, and influence what health research is prioritized.  

To help patients and those with connections to chronic disease become more aware about this opportunity, a new tool called the People with Lived Experience Peer Review Training Module was developed and launched. It was created in collaboration by several major health organizations and a cohort of people with lived experience with chronic disease. Both an English and French version of the module are freely available online. 

Peer review is a process whereby a research paper or grant is reviewed by a group of people with relevant expertise on the subject matter, who provide suggestions on how to improve the research, and to ensure that the proposed work is feasible, safe, and ethically sound. For too long, only researchers were involved in this process, but more recently those with lived experience with the disease at hand are being invited to the table.  

Manuel Escoto, who is the Patient, Family, Donor Partnerships & Knowledge Mobilization Manager at the Canadian Donation and Transplantation Research Program (CDTRP), notes that people with lived experience with chronic disease can bring a wealth of experience and expertise to the research realm. Yet it can be intimidating for patients when they first become involved in the review process and are presented with a lot of new information.  

“For some folks, it might be a bit overwhelming to join a scientific research project or peer review process,” he explains. “The value of this peer review module is that it provides a space for persons with lived experience, whether they have experience as patient partners or not, to learn about the peer review process, at their own pace, and decide whether it is a good fit for them.” 

The module provides participants with a general overview of what peer review means, the different types of peer review that exist, some general things to know before participating, and questions to ask of an organization before joining. As well it includes a vocabulary section that users can reference as needed.  

“We wanted to keep it very high level,” explains Alicia Murdoch, Project Manager at Can-SOLVE CKD, a Patient Oriented Research network, who help co-design the module. “It’s for people who are potentially interested in participating in peer review but may not be sure yet. The module is a way for them to test the waters, so to speak.” 

Importantly, it was co-designed with heavy input from a handful of several existing lived experience partners, and in collaboration between fiveour major health organizations, including The Kidney Foundation of Canada, the Canadian Donation and Transplantation Research Program (CDTRP), Can-SOLVE CKD, the Canadian Nephrology Trials Network (CNTN) and the Kidney Research Scientist Core Education and National Training program (KRESCENT). Rather than each creating their own individual training programs, these organizations saw value in pooling their resources and working as a team to create the new module. 

Sandra Holdsworth is a liver transplant recipient with more than 10 years of experience as patient partner, who helped co-design the module. She was excited at the idea of joining the development team, because she saw a lot of value in such a tool. “I thought it was great because this will be a course that patient partners can take to learn about peer reviews in general, and then they can reach out to organizations where they have a relationship to see if they can help with peer reviews and they are not jumping in headfirst,” she explains. 

While practised lived experience partners helped design the module, it was tested on inexperienced lived experience partners, to ensure it met their needs. “It was really great to see how excited these [new] lived experience partners were to test the module, and to be involved if there were next steps,” says Leanne Stalker, the National Director of Research at the Kidney Foundation of Canada who helped co-lead development of the module. “It did exactly what we wanted it to do, it made people excited.” 

She also notes that this new tool is widely applicable to any individuals with lived experience considering joining the peer review process, irrespective of what disease they have experience with or which organization they may consider joining as a lived experience partner doing peer review. 

“We were careful when we built it to make sure it wasn’t organization or disease-specific,” says Stalker. “So I think it will also be helpful for organizations outside of ours to be able to start to integrate lived experience partners into their peer review process.” 

Funding to complete the work came from a recent Health Research Training Platform grant focused on patient-oriented research, which was awarded to the KRESCENT program in 2022 from the Canadian Institutes of Health Research (CIHR) Institute of Nutrition, Metabolism and Diabetes. “This funding was specifically designed to help integrate patients and those with lived experience into the research environment and into our capacity building training program, but we felt it was better completed as a team with our colleagues at other organizations, rather than designing it alone,” says Stalker. 

Escoto, Murdoch, Stalker and Holdsworth all note this it was an impressive team effort to create the module, and that pooling together each other's resources to make the tool was a useful approach.  

“I think anything you do in partnership and collaboration is always going to result in a better product in the end,” notes Holdsworth. “This is a clear example of how patient engagement and co-design works. You bring all the relevant people the table and you produce a product that’s going to help everyone involved.” 

Holdsworth points out that, while some lived experience partners are already involved in peer review, it’s important to also include new voices and perspectives, representing a diverse array of experiences.   

“I’m hoping that this module will increase the amount of lived experience partners who are willing to help out with peer review,” she says. “We’re at the table and our voices are being heard. So now we want to make sure there’s more of us participating.”