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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Website

UK Standards for Public Involvement in Research

Authors: UK Standards for Public Involvement

Website

JLA Guidebook

Authors: James Lind Alliance

Website

Our Recovery: A community program to help you survive and thrive in the face of pain

Authors: Our Recovery

Article/PaperWebsite

Envisioning a Future for Including Patient Involvement in Vocational Training in the Life Sciences Industry

Authors: Liz Clark & Trishna Bharadia

Article/Paper

Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study

Year: 2024

Authors: Alison Thomson et al.

Article/Paper

Patient authorship of medical research publications: An evolution, revolution, and solution?

Year: 2024

Authors: Karen L. Woolley et al.

PDF

The PFMD Book of Good Practices

Authors: Patient Focused Medicines Development

Article/Paper

Patient Engagement Needs More Benefit Analysis, Fewer Theoretical Conversations

Year: 2024

Authors: Ella Balasa

Webinars

Bridging the Gap: A Personal Journey from Cystic Fibrosis to Patient Advocacy

Year: 2024

Authors: Ella Balasa

Website

Kidney Patient Involvement

Authors: Kidney Research UK

Website

PPI (Patient and Public Involvement) resources for applicants to NIHR research programmes

Year: 2019

Authors: National Institute of Health and Care Research

Website

What is Patient and Public Involvement and Engagement (PPIE)?

Authors: Health Data Research UK

Article/Paper

The right to participate: An under-utilised component of the right to the highest attainable standard health

Year: 2021

Authors: Kwanele Asante

Article/Paper

World leaders unite to embed social participation in health systems

Year: 2024

Authors: Antoine Boivin, Vincent Dumez, Farin Shore, Amanda Bok

Article/Paper

Trustworthy Evidence to Support Quality Digital Healthcare Policy for Underserved Communities: What Needs to Happen to Translate Evidence into Policy?

Year: 2024

Authors: Clare L. Ardern et al.

Article/Paper

Harnessing People’s Lived Experience to Strengthen Health Systems and Support Equitable Musculoskeletal Health Care

Year: 2023

Authors: Joletta L. Belton, Helen Slater, T. K. Sundari Ravindran, Andrew M. Briggs

Article/Paper

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

Year: 2024

Authors: Alison M. Hoens, Joletta Belton, Alex Scott, Clare L. Ardern

Article/PaperWebsite

Stemming the tide: Investing early in the mental health of Ontario’s 7- to 12-year-olds

Year: 2023

Authors: Various

PDF

Procedural pain management in children & youth: A toolkit for health professionals

Authors: Various

Article/Paper

Engaging youth and parents in clinical pediatric research: A case-based example

Year: 2023

Authors: Elise G Martin et al.

Article/Paper

Co-designing clinical trials alongside youth with chronic pain

Year: 2023

Authors: Zina Zaslawski et al.

Website

SKIP (Solutions for Kids in Pain) Resources

Authors: Richard Stephens

Blog

PxP Blog with Joletta Belton – Post 3

Year: 2024

Authors: Joletta Belton

Webinars

A patient editor’s take on scientific publishing with Richard Stephens

Year: 2024

Authors: Richard Stephens

Article/Paper

Patient-driven research priorities for patient-centered measurement

Year: 2024

Authors: Howard, A.F., Warner, L., Cuthbertson, L. et al.

Article/Paper

Conferences led by patients facilitate democratic decision making in healthcare

Year: 2024

Authors: Ajayi O, Gee P, Mulhall H, Richards D P, Riggare S.

Article/Paper

Co-creating and hosting PxP: a conference about patient engagement in research for and by patient partners

Year: 2024

Authors: Dr. Dawn P Richards et al.

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

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