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People Living with Arthritis as Research Partners & Collaborators

The arthritis community in Canada has a long history of involving people living with arthritis in research projects as collaborators and partners. We have collected some resources here that date back to when the Canadian Arthritis Network started this important work, and to which a number of CAPA members contributed. We will also add information on specific research projects we have collaborated on as we build this section of the site.

Resources

Patient Engagement Quality GuidanceIn the past year, we have participated on the working group of the Patient Focused Medicines Development initiative that has 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.  

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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.

Website about Clinical Trials - www.itstartswithme.ca / www.cacommenceavecmoi.ca
This website about clinical trials 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.
 
Plain Language Research Summaries

This is a new section of our website where patients can access information describing research projects that researchers are undertaking in Canada. A plain language summary of the study and study results will be posted as they become available. 

Presentations on Patient Involvement in Research

Knowledge Translation Canada - June 2017

Active Research Recruitment

Heart Pa- Coronary Heart Disease in Women with Rheumatoid Arthritis

 
 
 
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