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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Webinars

Day 1 Session 3 Recording PxP 2023

Year: 2023

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

Webinars

Day 1 Session 2 Recording PxP 2023

Year: 2023

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

Webinars

Day 1 Session 1 Recording PxP 2023

Year: 2023

Authors: Angela Ruddock and Shoba Dawson

Article

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

Article

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.

Article

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

Year: 2022

Authors: Breanna Reeves

PDF

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

Year: 2018

Authors: Arthritis Research Canada, The PEIRS Project Team

Article

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

Article

Hidden in plain sight? Identifying patient-authored publications

Year: 2022

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

Website

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

Authors: Envision the Patient

Other Tools

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

Authors: Envision Pharma Group

Other Tools

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

Year: 2023

Authors: WHO

Website

Access CR Consumer Involvement Resources

Year: Various

Authors: Access CR

Article

Patient-Generated Hypotheses Journal Issue 1

Year: 2023

Authors: Patient-Led Research Collaborative

Barriers to Citizen Science and Dissemination of Knowledge in Healthcare

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

Article

Personalizing Research: Involving, Inviting, and Engaging Patient Researchers

Year: 2022

Authors: Dana Lewis

Other Tools

Engagement in Health Research Literature Explorer

Authors: PCORI

Other Tools

Engagement Tool Resource Repository

Authors: PCORI

Other Tools

Building Effective Multi-Stakeholder Research Teams

Authors: PCORI

Learning Portal

PCORI Research Fundamentals

Authors: PCORI

Other Tools

EUPATI Connect matchmaking platform for researchers and EUPATI Fellows

Authors: EUPATI

Learning Portal

EUPATI Learning Lab trainings for researchers on patient engagement

Authors: EUPATI

Learning Portal

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

Authors: EUPATI

Website

European Patients’ Academy on Therapeutic Innovation (EUPATI)

Authors: EUPATI

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