Supporting Patient Involvement with Arthritis Society Canada

CAPA believes that the lived experience provided by individuals living with a disease is critical – and participating in research activities helps ensure this voice is heard. CAPA participated in the development of 2 presentations that support patient involvement in research:

• Introduction to Research; and,
• Peer Review for Grant Applications.

We encourage members of the CAPA community to review these and other materials to support their involvement in arthritis research.

Other Resources Supporting Patient Involvement in Research

Included here is a collection of resources that date back to when the Canadian Arthritis Network, and to which a number of CAPA members contributed.

• Patient Engagement Quality Guidance – CAPA participated on the working group of the Patient Focused Medicines Development initiative that built and released a Patient Engagement Quality Guidance document. This document is the result of an international collaboration of stakeholders representing the spectrum of research (i.e. patients, researchers, clinicians, health charities, patient organizations, industry, etc.). The Quality Guidance started with a landscape review of initiatives in the area of patient engagement in research, and was developed, piloted, and revised based on public feedback of the tool. The document will continue to be dynamic and currently has 7 principles to patient engagement in research and can be used by any stakeholders to guide their planning efforts, help them carry out a project, and importantly, to evaluate their patient engagement efforts in projects after the project is completed.
• Patient Involvement in Research – This presentation explains the history of how and why patients have been involved in arthritis research in Canada. This was developed jointly with the Canadian Arthritis Network, and demonstrates how patients were involved in the Network, and the benefits for patients, researchers, and students (trainees).
• Guide for Researchers and Consumers  – This document provides some helpful tips for both researchers and consumers (also known as patients or people living with arthritis) about working together on research projects.
• Consumer Impacts on Research at the Canadian Arthritis Network – This paper chronicles the different types of ways that consumers were involved in research projects and activities at the Canadian Arthritis Network.
• Consumers as Partners in Research Knowledge Translation and Exchange – This paper discusses ways that consumers can help researchers in disseminating information learned from their research.

More Information About Clinical Trials

This website about clinical trials (itstartswithme.ca) was developed with input from patients and caregivers who have participated in a clinical trial or have had a loved one participate in a clinical trial and by people who work in clinical trials and research, including 3 members of CAPA’s Steering Committee. The website tells you everything you need to know about clinical trials, things to think about or ask before you decide to participate, your rights as a person who is volunteering in a clinical trial, and has a glossary of terms for you. The site was created by the Network of Networks– an organization that represents organizations that do clinical research and trials in Canada.

Knowledge Translation Canada

This presentation was delivered by CAPA at the Knowledge Translation Summer Institute (2017).