Information & Links – Patient-Researcher Partnership
Patient-Researcher Engagement & Partnerships – SELECTED Resources
Canadian Resources
Canada’s Strategy for Patient-Oriented Research (SPOR)
https://cihr-irsc.gc.ca/e/41204.html
The national strategy launched by the Canadian Institutes of Health Research (CIHR) includes a network of provincial chapters or hubs that support patient-oriented research including support for patient-researcher partnerships. Each is structured to align with provincial priorities and needs.
Ontario: http://ossu.ca/
Alberta: https://spor.albertainnovates.ca/
Saskatchewan: https://www.scpor.ca/
Manitoba: https://chimb.ca/patientorientedresearch
Northwest Territories: https://nwtspor.ca/
Newfoundland and Labrador: http://www.nlsupport.ca/home.aspx
Quebec: http://unitesoutiensrapqc.ca/
Canadian Foundation for Healthcare Improvement (CFHI)
http://www.cfhi-fcass.ca/WhatWeDo/PatientEngagement/PatientEngagementResourceHub.aspx
The patient engagement resource hub developed and maintained by CFHI provides links to Canadian and international open source tools for use in patient and family engagement initiatives.
Patient-Oriented Research Curriculum in Child Health (PORCCH)
https://cchcsp.ca/index.php/curriculum/porcch/
An interactive online curriculum on patient-oriented research in child health.
Can-SOLVE CKD Network
A resource for patient-oriented research related to chronic kidney disease.
The CIHR Canadian HIV Trials Network – Community Engaged Research Practice
This web page includes questions and guidance for researchers to consider when engaging community members (individuals, friends and family, organizations, staff, etc. who identify with the study population). See: http://www.hivnet.ubc.ca/clinical-studies/community-engaged-research-practice/
The University Without Walls (UWW)
A CIHR-funded initiative supporting community-based HIV/AIDS education and research, based at St. Michael’s Centre for Urban Health Solutions. The Peer Researcher section has e-learning modules for people with lived experience of HIV/AIDS about research and being a peer researcher: http://www.universitieswithoutwalls.ca/peer-researchers/
ONTARIO
Ontario SPOR Support Unit (OSSU) – also listed above
Tools and resources listed here for patients, researcher and policy/decision makers; this includes information about the 7 OSSU-funded training initiatives in Ontario:
https://ossu.ca/resources/resources-training/
St. Michael’s Hospital – Partners in Research (PIR) Training Program
PIR program: https://knowledgetranslation.net/education-training/partners-in-research/
Other tools and resources for patient engagement listed here:
http://stmichaelshospitalresearch.ca/patient-engagement-resource/
Health Quality Ontario
https://www.hqontario.ca/Patient-Partnering
A list of tools and resources for patient engagement.
McMaster University: Masterclass
https://www.mcmasterforum.org/learn-how/system-leaders
The McMaster Masterclass combines face-to-face sessions and online modules to educate patients, researchers and others about patient-oriented research.
ALBERTA
Patient and Community Engagement Research (PaCER)
Based at the University of Calgary, PaCER is led by patient researchers and citizens trained in qualitative research who work to increase the role of patients in healthcare decision-making.
QUEBEC
Centre of Excellence on Partnership with Patients and the Public (CEPPP)
Based at the University of Montreal, CEPPP provides a hub for collaborations, events, resources and a network for researchers, patients and members of the public to join.
Selected International Resources
Beryl Institute
http://www.theberylinstitute.org/
A US-based institution committed to promoting improved patient experience in healthcare.
Patient-Centered Outcomes Research Institute (PCORI)
https://www.pcori.org/engagement
A US-based that funds patient-oriented research and provides engagement opportunities.
NIHR – INVOLVE
A UK-based organization that facilitates research partnerships.
