RESOURCE HUB

Our resource hub is updated regularly. We aim to bring our audience great tools, articles and webinars all in one place.

Can’t find what you were looking for? We’d love to hear from you. Send us an email, and we will do our best to help find a suitable resource. We might even write a new blog article 😊.

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You can also search our resources by type

Article/Paper

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research

Year: 2023

Authors: Wannheden, C., Riggare, S., Luckhaus, J.L., et al.

PDF

Patient-Led Research Scorecards

Year: 2023

Authors: Council of Medical Speciality Societies and Patient-Led Research Collaborative

Webinars

The Promise of Patient-Led Research Integration into Clinical Registries and Research

Year: 2023

Authors: Council of Medical Speciality Societies

Article/Paper

My 5 top learnings from tracking my Parkinson for over a decade

Year: 2022

Authors: Sara Riggare

Article/Paper

Reflections on patient engagement by patient partners: how it can go wrong

Year: 2023

Authors: Dawn P. Richards, Sabrina Poirier, Vina Mohabir, Laurie Proulx, Sue Robins & Jeffery Smith

Learning Portal

Course: A How-to Guide for Patient Engagement in Research

Year: 2022

Authors: CIHR-IMHA Patient Engagement Research Ambassadors (PERA)

Article/Paper

Patient and public involvement in an international rheumatology translational research project: an evaluation

Year: 2022

Authors: Savia de Souza, Eva C. Johansson, Susanne Karlfeldt, Karim Raza & Ruth Williams

Article/Paper

Patient-centered consultations for persons with musculoskeletal conditions

Year: 2022

Authors: Joletta Belton, Hollie Birkinshaw & Tamar Pincus

Article/Paper

Culturally responsive health research: A collaborative design model for equitable and sustainable community impact

Year: 2021

Authors: Janice Elizabeth Tufte, Rachel E Dungan, Sharon Attipoe-Dorcoo

Article/Paper

The sick-person rejects their disappearance

Year: 2021

Authors: Alex Haagaard

Article/Paper

Being-in-the-Room Privilege: Elite Capture and Epistemic Deference

Year: 2021

Authors: Olúfẹ́mi Táíwò

Article/Paper

A Healing Journey with Chronic Pain: A Meta-Ethnography Synthesizing 195 Qualitative Studies

Year: 2021

Authors: Francine Toye, PhD, Joletta Belton, MSc, Erin Hannink, DPT, Kate Seers, DSc, Karen Barker, PhD

Article/Paper

Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

Year: 2020

Authors: Petkovic, J., Riddle, A., Akl, E.A. et al.

Article/Paper

Patients as Partners in Research: It’s the Right Thing to Do

Year: 2019

Authors: Joletta Belton, MSc, Alison Hoens, MSc, BScPT, Alex Scott, PT, PhD, Clare L. Ardern, PT, PhD

Article/Paper

Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study

Year: 2018

Authors: Mathie, E.; Wythe, H.; Munday, D.; et al.

Article/Paper

Patient partner compensation in research and health care: the patient perspective on why and how

Year: 2018

Authors: Dawn P. Richards, Isabel Jordan, Kimberly Strain and Zal Press

Blog

Rosamund Snow: What makes a real patient?

Year: 2016

Authors: Rosamund Snow

Article/Paper

The disappearance of the sick-man from medical cosmology, 1770–1870

Year: 2009

Authors: N.D. Jewson

Other Tools

PDF

Medical Education and Research Involvement with Patient and Public Partners

Year: Unknown

Authors: Amy Price DPhil, Larry Chu MD | Stanford Anesthesia Informatics and Media (AIM) Lab

Website

Collection of links to the work of Marina Noordegraaf

Year: Various

Authors: Marina Noordegraaf

Other Tools

The Pathway of Patient Engagement in Rheumatology Research

Authors: Rheum Action Council

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RESOURCE HUB

A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research

Patient-Led Research Scorecards

The Promise of Patient-Led Research Integration into Clinical Registries and Research

My 5 top learnings from tracking my Parkinson for over a decade

Reflections on patient engagement by patient partners: how it can go wrong

Course: A How-to Guide for Patient Engagement in Research

Patient and public involvement in an international rheumatology translational research project: an evaluation

Patient-centered consultations for persons with musculoskeletal conditions

Culturally responsive health research: A collaborative design model for equitable and sustainable community impact

The sick-person rejects their disappearance

Being-in-the-Room Privilege: Elite Capture and Epistemic Deference

A Healing Journey with Chronic Pain: A Meta-Ethnography Synthesizing 195 Qualitative Studies

Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

Patients as Partners in Research: It’s the Right Thing to Do

Reciprocal relationships and the importance of feedback in patient and public involvement: A mixed methods study

Patient partner compensation in research and health care: the patient perspective on why and how

Rosamund Snow: What makes a real patient?

The disappearance of the sick-man from medical cosmology, 1770–1870

Patient Engagement in Research Scale

Alberta SPOR SUPPORT Unit (AbSPORU)

Patient Advisors Network

Health Research BC

Patient Compensation Tools

Medical Education and Research Involvement with Patient and Public Partners

Collection of links to the work of Marina Noordegraaf

The Pathway of Patient Engagement in Rheumatology Research

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