Determining Research Priorities in Dialysis Patients
Because people on dialysis and those who care for them “live the disease”, CANN-NET believes they have an important role in helping researchers understand what they identify as research priorities.
In 2013, CANN-NET launched the project “Determining the research priorities of Canadian dialysis patients, caregivers and clinicians” to determine the research priorities of people receiving dialysis treatment and the priorities of those who help care for them, such as family, friends, doctors, and nurses.
CANN-NET developed a dialysis patient priority setting survey with the support of Dr. Andreas Laupacis, The Kidney Foundation of Canada and the James Lind Alliance, an independent, non-profit organization from the United Kingdom that has pioneered this approach to determining patients’ research priorities in the UK.
The project's Steering Committee identified the top 30 research questions that were submitted in the survey and then held a one-day workshop with a group of people on dialysis, people involved in their care and clinicians to identify the Top Ten research questions.
The Top 10 research priorities resulting from this initiative are now available to inform researchers and help guide the future of kidney disease research in Canada. The Kidney Foundation’s poster presentation of this initiative was awarded a prize at the Annual Conference of the International Federation of Kidney Foundations (IFKF) in 2013.
Download The Kidney Foundation’s poster presentation of the Top 10 research priorities
The Steering Committee guiding this project included:
- Michael Gladish (Yukon), Claire Large (Alberta), Brenda Toth (Saskatchewan) and Howard Silverman (Quebec), who are either on dialysis, close to needing dialysis or have had a transplant
- Annette Cyr, a former caregiver of someone on dialysis from Nova Scotia
- Brenda Hemmelgarn and Braden Manns, nephrologists and researchers from the University of Calgary
- Sally Crowe, from the James Lind Alliance, Oxford, United Kingdom
- Wim Wolfs, National Director of Research at The Kidney Foundation of Canada
- Andreas Laupacis, a physician and researcher from St. Michael’s Hospital in Toronto (Chair)
- Erin Lillie, a research associate from St. Michael’s Hospital in Toronto