RESOURCE HUB

Looking for articles, webinars, and other resources on a variety of health research topics? Explore our library below filtered by resource type.

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The Pathway of Patient Engagement in Rheumatology Research

Authors: Rheum Action Council

Collection of links to the work of Marina Noordegraaf

Year: Various

Authors: Marina Noordegraaf

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

Patient Compensation Tools

Year: Unknown

Authors: National Health Council

Health Research BC

Authors: Health Research BC

Patient Advisors Network

Authors: Patient Advisors Network

Alberta SPOR SUPPORT Unit (AbSPORU)

Authors: Alberta SPOR SUPPORT Unit (AbSPORU)

Patient Engagement in Research Scale

Authors: Clayon Hamilton, PhD

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

Year: 2009

Authors: N.D. Jewson

Rosamund Snow: What makes a real patient?

Year: 2016

Authors: Rosamund Snow

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

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.

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

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.

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

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

Year: 2021

Authors: Olúfẹ́mi Táíwò

The sick-person rejects their disappearance

Year: 2021

Authors: Alex Haagaard

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

Patient-centered consultations for persons with musculoskeletal conditions

Year: 2022

Authors: Joletta Belton, Hollie Birkinshaw & Tamar Pincus

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

Learning Portal

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

Year: 2022

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

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

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

Year: 2022

Authors: Sara Riggare

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

Year: 2023

Authors: Council of Medical Speciality Societies

Patient-Led Research Scorecards

Year: 2023

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

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.

Learning Portal

Patient Engagement Tool Kit

Year: 2023

Authors: Patient Outcomes Research to Advance Learning – PORTAL – PCORI funded project

A square peg in a round hole: Patient and public author affiliations in academic journals

Year: 2023

Authors: Dawn P. Richards and Jim Elliott

Patients as Partners in Research: There Is Plenty of Help for Researchers

Year: 2020

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

IMHA’s Patient Engagement Research Ambassadors’ Journey to Developing “A How-to-Guide to Patient Engagement in Research”

Year: 2022

Authors: Dawn P Richards, Christine Thomas, and Gillian Newman

Case Study: Expanding and supporting the patient partner community in research

Year: 2023

Authors: Laurie Proulx, Nadine Lalonde, Anna Samson, Linda Roy, Julie McKenna

Engaging Patient Partners as Peer Reviewers of Grant Applications: Tips for Everyone Involved

Year: 2023

Authors: Dawn Richards, Deb Baranec, Eileen Davidson, Trudy Flynn

Co-creating through Social Media Crowdsourcing

Year: 2022

Authors: Dr. Dawn Richards

European Patients’ Academy on Therapeutic Innovation (EUPATI)

Authors: EUPATI

Learning Portal

Open Classroom training resources on medicines R&D, medical devices and digital health

Authors: EUPATI

Learning Portal

EUPATI Learning Lab trainings for researchers on patient engagement

Authors: EUPATI

EUPATI Connect matchmaking platform for researchers and EUPATI Fellows

Authors: EUPATI

Learning Portal

PCORI Research Fundamentals

Authors: PCORI

Building Effective Multi-Stakeholder Research Teams

Authors: PCORI

Engagement Tool Resource Repository

Authors: PCORI

Engagement in Health Research Literature Explorer

Authors: PCORI

Personalizing Research: Involving, Inviting, and Engaging Patient Researchers

Year: 2022

Authors: Dana Lewis

From Individuals to Systems and Contributions to Creations: Novel Framework for Mapping the Efforts of Individuals by Convening The Center of Health and Health Care

Year: 2022

Authors: Dana Lewis, Liz Salmi, Alicia Staley and John Harlow

Barriers to Citizen Science and Dissemination of Knowledge in Healthcare

Year: 2022

Authors: Dana Lewis

Patient-Generated Hypotheses Journal Issue 1

Year: 2023

Authors: Patient-Led Research Collaborative

Access CR Consumer Involvement Resources

Year: Various

Authors: Access CR

WHO framework for meaningful engagement of people living with noncommunicable diseases, and mental health and neurological conditions

Year: 2023

Authors: WHO

Toolkit for co-creating plain language summaries of publications with patients

Authors: Envision Pharma Group

Plain language resources to support patient authorship of peer-reviewed publications

Authors: Envision the Patient

Hidden in plain sight? Identifying patient-authored publications

Year: 2022

Authors: Jacqui Oliver, Dawn Lobban, Laura Dormer, Joanne Walker, Richard Stephens & Karen Woolley

Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations

Year: 2020

Authors: Lauri Arnstein, Anne Clare Wadsworth, Beverley Anne Yamamoto, Richard Stephens, Kawaldip Sehmi, Rachel Jones, Arabella Sargent, Thomas Gegeny & Karen L. Woolley

Workbook to guide the development of a Patient Engagement In Research (PEIR) Plan

Year: 2018

Authors: Arthritis Research Canada, The PEIRS Project Team

“He Who Owns the Data, Owns the Patient,” Black Participants and Clinical Trials

Year: 2022

Authors: Breanna Reeves

Improving Kidney Disease Research in the Black Community: The Essential Role of Black Voices in the APOLLO Study

Year: 2021

Authors: Ana S. Iltis et al.

Developing a toolkit for increasing the participation of black, Asian and minority ethnic communities in health and social care research

Year: 2022

Authors: Azhar Farooqi, Karan Jutlla, Raghu Raghavan, Andrew Wilson, Mohammud Shams Uddin, Carol Akroyd, Naina Patel, Pamela Peggy Campbell-Morris & Aaisha Tasneem Farooqi

Day 1 Session 1 Recording PxP 2023

Year: 2023

Authors: Angela Ruddock and Shoba Dawson

Day 1 Session 2 Recording PxP 2023

Year: 2023

Authors: Maria Dutarte, Rebecca Mbewe, Christine Broderick, Linda Hunter and Trudy Flynn

Day 1 Session 3 Recording PxP 2023

Year: 2023

Authors: Janice Tufte, Laurie Proulx, Anna Samson and Amy Price

Day 2 Session 1 Recording PxP 2023

Year: 2023

Authors: Nader Ghasemlou, Linda Li, Diarmuid Denneny and Joletta Belton

Grant Review 101: The Basics of Reviewing Grant Applications

Year: 2023

Authors: Dr. Dawn Richards for the Return to Health & Performance Lab (presentation slides also available on PxP Resource Hub)

Presentation Slides for Grant Review 101: The Basics of Reviewing Grant Applications

Year: 2023

Authors: Dr. Dawn Richards for the Return to Health & Performance Lab (webinar recording also available on PxP Resource Hub)

Personal science in Parkinson’s disease. A patient-led research study.

Year: 2022

Authors: Sara Riggare

Recognizing patient partner contributions to health research: a systematic review of reported practices

Year: 2023

Authors: Grace Fox, Manoj M. Lalu, Tara Sabloff, Stuart G. Nicholls, Maureen Smith, Dawn Stacey, Faris Almoli & Dean A. Fergusson

CIHR-IMHA Patient Compensation Guideline

Year: 2023

Authors: Canadian Institutes of Health Research – Institute of Musculoskeletal Health and Arthritis

CIHR-IG Patient Partner Compensation Guidelines

Year: 2023

Authors: Canadian Institutes of Health Research – Institute of Genetics

As Per Usual Podcast

Authors: Bryn Robinson and Anna Chudyk

Patient Access to Papers

Authors: Elsevier

Participant Chat Summary from PxP 2023 Day 1 Session 1

Year: 2023

Authors: PxP Hub

Day 2 Session 2 Recording PxP 2023

Year: 2023

Authors: Dana Lewis, Alex Haagaard, Sara Riggare and Trudy Flynn

Participant Chat Summary from PxP 2023 Day 1 Session 2

Year: 2023

Authors: PxP Hub

Participant Chat Summary from PxP 2023 Day 1 Session 3

Year: 2023

Authors: PxP Hub

Day 2 Session 3 PxP 2023

Year: 2023

Authors: Hannah Wei, Sneha Dave and Linda Hunter

Day 3 Session 1 Recording PxP 2023

Year: 2023

Authors: Lynn Laidlaw, Sabrina Poirier, Patrick Gee and Janelle Bowden

Day 3 Session 2 Recording PxP 2023

Year: 2023

Authors: Alma McCormick, Hem Devan, Cheryl Davies and Sandra Jayacodi

Day 3 Session 3 Recording PxP 2023

Year: 2023

Authors: Eileen Davidson, Karen Woolley, Joletta Belton and Janice Tufte

PxP Blog with Joletta Belton – Post 1

Year: 2023

Authors: Joletta Belton

Participant Chat Summary from PxP 2023 Day 2 Session 1

Year: 2023

Authors: PxP Hub

Participant Chat Summary from PxP 2023 Day 2 Session 2

Year: 2023

Authors: PxP Hub

Participant Chat Summary from PxP 2023 Day 2 Session 3

Year: 2023

Authors: PxP Hub

PxP Blog with Joletta Belton – Post 2

Year: 2024

Authors: Joletta Belton

Chat Summary from PxP and PERA 2024 Webinar 1

Year: 2024

Authors: PxP Hub

PxP and PERA 2024 Webinar 1: Demystifying the research process from patient partner perspectives

Year: 2024

Authors: Ron Beleno, Trinity Lowthian and Ellen Wang

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