What is “Patient partnership in research”?
"The patient is a full member of the research team and are considered for their experiential knowledge and expertise" (Pomey 2015)
“Patient engagement occurs when patients meaningfully and actively collaborate in the governance, priority setting, and conduct of research, as well as in the summarizing, distributing, sharing, and applying of its resulting knowledge (i.e., the process referred to as ‘knowledge translation’).”
What do we mean by "patients"?
In the CNTRP, we use the term "patients" to include someone waiting for a life-saving transplant, someone living with a transplant (stem cell, heart, lung, liver, kidney, islet, pancreas, small bowel), a living donor, a family/friend of a deceased donor, a caregiver, a family member of a transplant recipient and/or anyone affected by donation and transplantation with lived experience.
Why engage patients as partners in research?
Patients have experiential knowledge of living with an illness and can provide valuable insight on which research topics are most relevant for them. Involving patients in setting research priorities is a way to enhance the quality, relevance and transparency of medical research. The patients are the direct beneficiaries of the research outcomes and therefore research should strive to meet their important needs.
What kind of patients could become a patient partner?
There are no educational requirements to be involved in research. The patient does not need to have any background in medical or biological science and does not need to have any post-secondary education. What is important is their experiential knowledge, which means the knowledge of living with a medical condition.
If you wish to have more information about Patient Partnership in donation and transplantation research please contact Sylvain Bédard - the CNTRP Patient-Partnership Coordinator: