Featured Publication in Canadian Journal of Kidney Health and Disease: Mary Beaucage
The CDTRP is happy to highlight the paper entitled “Defining the Scope of Knowledge Translation Within a National, Patient-Oriented Kidney Research Network” that was published in the Canadian Journal of Kidney Health and Disease featuring CDTRP patient partner Mary Beaucage. In this paper, Mary highlights the relevance of IKT through her work with the Can-SOLVE CKD Network. We asked her a few questions about it:
How do you think the research will advance Integrated knowledge translation and patient engagement?
First, it is important to gain a basic understanding of what knowledge translation is, why it’s important and the benefits. With patient-oriented Research, Integrated Knowledge Translation (IKT) can go beyond including policymakers throughout the research process. I’ve heard of changes made to research projects at Can-SOLVE CKD based on patient input. Changing language from illness to wellness comes to mind.
How do you think patient partners should be involved in future directions of this work?
There is an opportunity to look beyond traditional ways to disseminate research results. I believe you need to connect with patients, family in areas that are accessible, and involve them in the process. Patients are great at letting you know if a lay summary, for example, is too full of jargon or acronyms. Other tools like social media and using infographics make information more accessible. At Can-SOLVE CKD we’ve created a KT Community of Practice (CoP) to help researchers and patient partners work together to develop these tools and look at others like newsletters and Pecha Kucha presentations.
How has the CDTRP supported the work?
CDTRP has a great growth opportunity to integrate more patient partners into the research projects they fund. Just as important is integrating supports for the patient partners. It’s great to see the growth in patient partners in finding their voice, and in researchers automatically thinking about involving patients in their research.
How has your experience with CDTRP reflected a commitment to patient partnerships?
My role in CDTRP has included providing a First Nations perspective on determinants of health, and the historic problems of research done on Indigenous people and not done with us, including informed consent and completing the circle with information sharing.
I look at myself and the experience I’ve gained, and I think, “if I knew then what I know now”, I’d ask more questions, for example. I think there’s an opportunity for experienced patient partners to mentor and support new ones wanting to engage. I know I’m still learning, but I see myself more and more in those mentoring relationships.
Integrated knowledge translation (IKT) is a collaborative approach whereby knowledge created through health research is utilized in ways that are relevant to the needs of all stakeholders. However, research teams have limited capacity and know-how for achieving IKT, resulting in a disconnect between the generation and application of knowledge. The goal of this report is to describe how IKT research was achieved across a large-scale, patient-oriented research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD).
About the Canadian Journal of Kidney Health and Disease
Canadian Journal of Kidney Health and Disease, the official journal of the Canadian Society of Nephrology, is an open access, peer-reviewed online journal that encourages high quality submissions focused on clinical, translational and health services delivery research in the field of chronic kidney disease, dialysis, kidney transplantation and organ donation. Our mandate is to promote and advocate for kidney health as it impacts national and international communities.
Basic science, translational studies and clinical studies will be peer reviewed and processed by an Editorial Board comprised of geographically diverse Canadian and international nephrologists, internists and allied health professionals; this Editorial Board is mandated to ensure highest quality publications.