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
| Tool | Developed By | Tool Type |
|---|---|---|
| Canadian Institutes of Health Research (CIHR) | Strategy for Patient Oriented Research (SPOR) | Guide & Toolkit |
| Spectrum of Public Participation | International Association for Public Participation IAP2 - Canada & Patient Voices Network | Infographic |
| POR Description video | Alberta SUPPORT SPOR Unit | Video |
| Guide: Patient-citoyen partenaire en recherche | Unité de Soutient Quebec | Guide |
| Short guide on patient partnerships in rare diseases research projects | European Joint Programme on Rare Diseases | Guide |
Online POR Training
| Tool | Developed By | Tool Type |
|---|---|---|
| Developing training and support for public involvement in research | INVOLVE UK / NHS/ NIHR | Guide |
| POR Pathways Self-Assessment Readiness Tool: for Patients - competancy framework | BC SUPPORT Unit | Competency tool |
| POR Pathways Self-Assessment Readiness Tool: for Researchers - competancy framework | BC SUPPORT Unit | Competency tool |
| Online, live POR training for Patient-partners | Maritime SPOR SUPPORT Unit | Online 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 Program | Online Training |
| KIDNEY PRO | Can-SOLVE Canadian Kidney Disease Network | Online Training |
| Patient-Oriented Research Training and Learning – Primary Health Care (PORTL-PHC) | Ontario SPOR SUPPORT Unit-funded initiative, housed at Western University | Online Training |
| Understanding Research | Unité de Soutient/ Centre of Excellence on Partnership with Patients and the Public/ McGill University | Online Training |
| Les Fondements du Partenariat Patient; le Partenariat avec les Patients dans la Recherche en Santé | Unité de Soutient Quebec | Sessions en ligne synchrones |
| FYREworks (USA) | Patient-Centered Outcomes Research Institute (PCORI) | Online Training |
| Fundamentals of qualitative research | Yale University | Video |
| Family Engagement in Research Program | McMaster University | Online Training |
| Research Fundamentals: preparing you to successfully contribute to research | Patient-Centered Outcomes Research Institute (PCORI) | Online Training |
Patient Engagement
Communication and Writing for Patient Partners
| Tool | Developed By | Tool Type |
|---|---|---|
| Plain Language Guide | BC SUPPORT Unit | Guide |
| A Plain Language Checklist | Health Quality Ontario | Checklist |
| Jargon Buster | CIHR | Glossery |
| The Basics about Conference (and Other) Abstracts | CIHR | Infographic |
POR Project Planning
| Tool | Developed By | Tool Type |
|---|---|---|
| POR Project Planning Tool - checklist | Saskatchewan & Newfoundland SUPPORT units | Checklist |
| POR Project Planning Tool - checklist | Newfoundland SUPPORT unit | Checklist |
| PCORI Engagement Guide & Rubric for Applicants | Patient-Centered Outcomes Research Institute (PCORI) | Toolkit |
| Evidence-informed Practices and Strategies for POR: A 'menu' for research teams | BC SUPPORT Unit | Guide & Checklist |
| Patient/Family/Caregivers/Community Research Partnership: Planning Guide for Researchers | Kids Brain Health Network | Guide |
Patient Partner Compensation
| TOOL | DEVELOPED BY | Tool Type |
|---|---|---|
| Considerations in paying Patient Partners in Research | Canadian Institutes of Health Research (CIHR) | Guide |
| Recommendations on Patient Engagement Compensation | SPOR Networks in Chronic Diseases and the PICHI Network | Guide |
| Patient & Public Engagement Budget Builder | George & Fay Lee Centre for Healthcare Innovation (Manitoba SUPPORT unit) | Tool |
| Module dédommagement financier des patients partenaires en recherche | Unité de Soutient Quebec | En présentiel ou en ligne |
Equity Diversity and Inclusion (EDI)
POR Project Evaluation
| Tool | Developed By | Tool Type |
|---|---|---|
| Patient/Caregiver Surveys: Evaluating the patient partnership in research | Patients Canada / Ontario SPOR | Checklists |
| Researcher Surveys: Evaluating the patient partnership in research | Patients Canada / Ontario SPOR | Checklists |
| WE- ENACT | Patient-Centered Outcomes Research Institute (PCORI) | Tool |
| Patient Engagement in Research Scale (PEIRS) | BC SUPPORT Unit | Tool |
| Public and Patient Engagement Evaluation Tool (PPEET) | McMaster - Faculty of Health Sciences | Tool |
| Evaluation Toolkit | Centre of Excellence on Partnership with Patients and the Public | Toolkit |
| Module Évaluation du partenariat patient en recherche | Unité de Soutient Quebec | Session en ligne synchrones |
POR Project Reporting
| Tool | Developed By | Tool 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.