The Neuromuscular Disease Network for Canada

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Patient Oriented Research Resources

About these resources

This collection of online resources and websites was sourced primarily from organizations and centres across Canada, but includes some from across the world.

These resources are for all stakeholders engaged in patient oriented research (POR), including people affected by neuromuscular diseases, researchers, and advocates.

Introduction and Overview of POR

ToolDeveloped ByTool Type
Canadian Institutes of Health Research (CIHR)Strategy for Patient Oriented Research (SPOR)Guide & Toolkit
Spectrum of Public ParticipationInternational Association for Public Participation IAP2 - Canada & Patient Voices NetworkInfographic
POR Description videoAlberta SUPPORT SPOR UnitVideo
Guide: Patient-citoyen partenaire en rechercheUnité de Soutient QuebecGuide
Short guide on patient partnerships in rare diseases research projectsEuropean Joint Programme on Rare DiseasesGuide

Online POR Training

ToolDeveloped ByTool Type
Developing training and support for public involvement in researchINVOLVE UK / NHS/ NIHRGuide
POR Pathways Self-Assessment Readiness Tool: for Patients - competancy frameworkBC SUPPORT UnitCompetency tool
POR Pathways Self-Assessment Readiness Tool: for Researchers - competancy frameworkBC SUPPORT UnitCompetency tool
Online, live POR training for Patient-partnersMaritime SPOR SUPPORT UnitOnline Training
Patient-Oriented Research Curriculum
In Child Health (PORCCH)
Multiple: CIHR, Ontario SPOR, BC SUPPORT, Child-Bright, Ontario Child Health SUPPORT Unit, Canadian Child Health Clinican Scientist ProgramOnline Training
KIDNEY PROCan-SOLVE Canadian Kidney Disease NetworkOnline Training
Patient-Oriented Research Training and Learning – Primary Health Care (PORTL-PHC)Ontario SPOR SUPPORT Unit-funded initiative, housed at Western UniversityOnline Training
Understanding ResearchUnité de Soutient/ Centre of Excellence on Partnership with Patients and the Public/ McGill UniversityOnline Training
Les Fondements du Partenariat Patient; le Partenariat avec les Patients dans la Recherche en SantéUnité de Soutient QuebecSessions en ligne synchrones
FYREworks (USA)Patient-Centered Outcomes Research Institute (PCORI)Online Training
Fundamentals of qualitative researchYale UniversityVideo
Family Engagement in Certificate ProgramKids Brain Health NetworkOnline Training
Research Fundamentals: preparing you to successfully contribute to research Patient-Centered Outcomes Research Institute (PCORI)Online Training

Patient Engagement

ToolDeveloped ByTool Type
Patient and Public Engagement Evaluation ToolkitCentre of Excellence on Partnership with Patients and the PublicToolkit
Patient Engagement in Research (PEIR) PlanArthritis Research Canada (ARC)Guide
Patient Engagement Certificate Program: Modules (coming soon)CIHR IMHA – Patient Engagement Research Ambassadors (PERA) ProjectTraining
Decision Aids for Patient-partner Enagement with Clinical Trials Clinical Trials OntarioDecision Aid
Methods of Patient & Public Engagement: a GuideGeorge & Fay Lee Centre for Healthcare Innovation (Manitoba SUPPORT unit)Guide
Participatory Methods Toolkit: a practioner's manualKing Baudouin FoundationGuide
Patient, Family, Caregiver and Public Engagement Planning GuideBC Ministry of Health / BC SUPPORT UnitGuide
SCPOR POR Research Level of Engagement Tool (POTLET)Saskatchewan Centre for Patient-Oriented ResearchScoring Tool
The Indigenous Research Level of Engagement Tool (IRLET)Saskatchewan Centre for Patient-Oriented ResearchScoring Tool
Patient Engagement in Health Research: a how-to guide for researchersAlberta SUPPORT SPOR UnitGuide
Methods in Patient Engagement: Discussion & Focus GroupsGeorge & Fay Lee Centre for Healthcare Innovation (Manitoba SUPPORT unit)Guide
Patient Engagment TrainingPatient Focused Medicines DevelopmentOnline Training
Building Effective Multi-stakeholder Reseach TeamsPatient-Centered Outcomes Research Institute (PCORI)Online Training & Toolkit
A quick reference guide: authentic parternship in research IMPACTKids Brain Health NetworkInfographic
Engaging as Partners in Research - InfographicKids Brain Health NetworkInfographic
Checklist for Patient Partners in ResearchKids Brain Health NetworkInfographic
Tips for communicating in research partnerships - InfographicKids Brain Health NetworkInfographic
Strategies to engage families in research - InfographicKids Brain Health NetworkInfographic
A Roadmap for Family Partners to get Started and Partner in Research Kids Brain Health NetworkInfographic

Communication and Writing for Patient Partners

ToolDeveloped ByTool Type
Plain Language GuideBC SUPPORT UnitGuide
A Plain Language ChecklistHealth Quality OntarioChecklist
Jargon BusterCIHRGlossery
The Basics about Conference (and Other) AbstractsCIHRInfographic

POR Project Planning

ToolDeveloped ByTool Type
POR Project Planning Tool - checklistSaskatchewan & Newfoundland SUPPORT unitsChecklist
POR Project Planning Tool - checklistNewfoundland SUPPORT unitChecklist
PCORI Engagement Guide & Rubric for ApplicantsPatient-Centered Outcomes Research Institute (PCORI)Toolkit
Evidence-informed Practices and Strategies for POR: A 'menu' for research teamsBC SUPPORT UnitGuide & Checklist
Patient/Family/Caregivers/Community Research Partnership: Planning Guide for ResearchersKids Brain Health NetworkGuide

Patient Partner Compensation

TOOLDEVELOPED BYTool Type
Considerations in paying Patient Partners in Research Canadian Institutes of Health Research (CIHR)Guide
Recommendations on Patient Engagement CompensationSPOR Networks in Chronic
Diseases and the PICHI Network
Guide
Patient & Public Engagement Budget BuilderGeorge & Fay Lee Centre for Healthcare Innovation (Manitoba SUPPORT unit)Tool
Module dédommagement financier des patients partenaires en rechercheUnité de Soutient QuebecEn présentiel ou en ligne

Equity Diversity and Inclusion (EDI)

ToolDeveloped ByTool Type
Equity, Diversity and Inclusion ToolkitNewfoundland & Labrador SUPPORT UnitGuide
Checklist for Integrating Sex and Gender considerations Saskatchewan Centre for POR / SPORChecklist
Knowledge Nudge (multiple blogs on patient engagement, diversity, ethics, trauma informed cultural safe engagement)George & Fay Lee Centre for Healthcare Innovation (Manitoba SUPPORT unit)Toolkit
Intercultural Compentacy ResourcesBC SUPPORT UnitToolkit
Planting the Seeds: Resources for Researchers Working with Indigenous CommunitiesBC Support UnitToolkit
Wabishki Bizhiko Skaanj Learning PathwayIndigenous Peoples’ Engagement and Research CouncilToolkit & Online Training
Building Research Relationships with Indigenous Communities (BRRIC) moduleSaskatchewan Centre for POR / SPOROnline Training
Realizing Indigenous Rights and Responsibilities in Research (RIRRR)Saskatchewan Centre for POR / SPOROnline Training
Intersectionality and KT GuideKnowledge Translation Program - St Michael's Hosptial, TorontoGuide
Inclusive Langague GuideBC Centre for Disease ControlGuide
ENGAGE plusUniversité de SherbrookeRessources

POR Project Evaluation

ToolDeveloped ByTool Type
Patient/Caregiver Surveys: Evaluating the patient partnership in researchPatients Canada / Ontario SPORChecklists
Researcher Surveys: Evaluating the patient partnership in researchPatients Canada / Ontario SPORChecklists
WE- ENACTPatient-Centered Outcomes Research Institute (PCORI)Tool
Patient Engagement in Research Scale (PEIRS)BC SUPPORT UnitTool
Public and Patient Engagement Evaluation Tool (PPEET)McMaster - Faculty of Health SciencesTool
Evaluation ToolkitCentre of Excellence on Partnership with Patients and the PublicToolkit
Module Évaluation du partenariat patient en rechercheUnité de Soutient QuebecSession en ligne synchrones

POR Project Reporting

ToolDeveloped ByTool Type
Guidance for Reporting Involvement of Patients and the Public (GRIPP 2)EQUATOR Network https://www.equator-network.org/Checklist

Why are these resources important?

Canadians with neuromuscular diseases, their families, and advocates are increasingly asked to take an active role in research. Research and advocacy training empowers patients and ensures they have the confidence and knowledge needed to bring their expertise forward to guide discussions and inform decisions regarding health care, research, and therapy development with policy makers, industry and scientists. Read more about the NMD4C’s work in training expert patients to participate in POR.

Online resources and websites change over time, so please contact communications coordinator James Davis if any links are broken or if you find other resources worth listing.