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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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

Hidden in plain sight? Identifying patient-authored publications

Year: 2022

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

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

Authors: Envision the Patient

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

Authors: Envision Pharma Group

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

Year: 2023

Authors: WHO

Access CR Consumer Involvement Resources

Year: Various

Authors: Access CR

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

Personalizing Research: Involving, Inviting, and Engaging Patient Researchers

Year: 2022

Authors: Dana Lewis

Engagement in Health Research Literature Explorer

Authors: PCORI

Engagement Tool Resource Repository

Authors: PCORI

Building Effective Multi-Stakeholder Research Teams

Authors: PCORI

Learning Portal

PCORI Research Fundamentals

Authors: PCORI

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

European Patients’ Academy on Therapeutic Innovation (EUPATI)

Authors: EUPATI

Co-creating through Social Media Crowdsourcing

Year: 2022

Authors: Dr. Dawn Richards

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

Year: 2023

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

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

Year: 2023

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

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

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

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

Year: 2023

Authors: Dawn P. Richards and Jim Elliott

Learning Portal

Patient Engagement Tool Kit

Year: 2023

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

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.

Patient-Led Research Scorecards

Year: 2023

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

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

Year: 2023

Authors: Council of Medical Speciality Societies

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

Year: 2022

Authors: Sara Riggare

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

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