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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Article/Paper

Patient engagement in a Canadian health research funding institute: implementation and impact

Year: 2024

Authors: Dr. Dawn P Richards et al.

Website

A curated selection of resources to support and involve consumers in research

Year: 2022

Authors: AccessCR

Website

Resources to evaluate and improve Community Advisory Committees

Authors: Health Issues Centre

Website

Consumer Involvement & Engagement Toolkit

Authors: Australian Clinical Trials Alliance

Website

Solutions for Kids in Pain (SKIP) Resources

Authors: Solutions for Kids in Pain (SKIP)

Website

CPN Resources for Patients

Authors: Chronic Pain Network (CPN)

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

Article/Paper

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

Year: 2023

Authors: Dawn P Richards et al.

Website

A series of co-developed knowledge tools that are applicable in a variety of research contexts on engaging patients and families

Authors: Kids Brain Health Network

Website

The Involvement Matrix

Authors: Various

PDF

Get Involved in Quality Improvement: A guide for Patient and Caregiver Advisors

Authors: Health Quality Ontario

Website

A non-technical summary of predatory journals and the impact they could have on the patient community

Year: 2022

Authors: The Ottawa Hospital Research Institute

PDF

Methods of Patient and Public Engagement

Year: 2020

Authors: University of Manitoba

Article/Paper

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

Year: 2022

Authors: Ana S. Iltis et al.

Article/Paper

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

Year: 2022

Authors: Breanna Reeves

Website

Camden Coalition

Authors: Camden Coalition

Website

Ovarian Cancer Research Alliance (OCRA)

Authors: Ovarian Cancer Research Alliance (OCRA)

Website

National Coalition for Cancer Survivorship (NCCS)

Authors: National Coalition for Cancer Survivorship (NCCS)

Article/Paper

Sharing space at the research table: exploring public and patient involvement in a methodology priority setting partnership

Year: 2023

Authors: Nikita N. Burke et al.

Article/Paper

Public involvement could usefully inform ethical review, but rarely does: what are the implications?

Year: 2017

Authors: Kristina Staley and Jim Elliott

Article/Paper

Who should I involve in my research and why? Patients, carers or the public?

Year: 2021

Authors: Kristina Staley, Jim Elliott, Derek Stewart and Roger Wilson

Article/Paper

Developing consensus on core outcome sets of domains for acute, the transition from acute to chronic, recurrent/episodic, and chronic pain: results of the INTEGRATE-pain Delphi process

Year: 2023

Authors: Giulia Bova et al.

Article/Paper

Recommendations for the development, implementation, and reporting of control interventions in efficacy and mechanistic trials of physical, psychological, and self-management therapies: the CoPPS Statement

Year: 2023

Authors: David Hohenschurz-Schmidt et al.

Webinars

Motivations for being a patient partner in research

Year: 2024

Authors: Anna Samson, Larry Funnell, Therese Lane, and Kimberly Strain

Article/Paper

Impact of sickle cell disease on patientsʼ daily lives, symptoms reported, and disease management strategies: Results from the international Sickle Cell World Assessment Survey (SWAY)

Year: 2020

Authors: Ifeyinwa Osunkwo et al.

Blog

Participant Chat Summary from PxP 2023 Day 3 Session 3

Year: 2023

Authors: PxP Hub

Blog

Participant Chat Summary from PxP 2023 Day 3 Session 2

Year: 2023

Authors: PxP Hub

Blog

Participant Chat Summary from PxP 2023 Day 3 Session 1

Year: 2023

Authors: PxP Hub

Blog

Chat Summary PxP and PERA Webinar 2 2024

Year: 2024

Authors: PxP Hub

Webinars

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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