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Introduction

Introduction

Introduction

Get the Facts

My Priorities

My Priorities

What are My Priorities?

Learn More

Learn More

Resources for Engaging as a Patient Partner

My Readiness

My Readiness

Comparing My Priorities with Perceived Benefits/Risks

My Decision

My Decision

Next Steps

Canada’s strategy for Patient-Oriented Research (SPOR) aspires for patients, researchers, health care providers and decision-makers to collaborate to build a better health care system. Patients must be meaningfully engaged as partners in health research to ensure the needs of Canadians are being addressed. This includes focusing on priorities important for patients and producing results that inform policy and are taken up to improve the health of Canadians.

This Patient-Oriented Research Collaboration Project was supported by the Canadian Institutes of Health Research (CIHR) and funding was also provided by the Ontario SPOR SUPPORT Unit, which is supported by the Canadian Institutes of Health Research and the Province of Ontario.

Decision aids are usually used by patients and doctors to make treatment decisions together. These decision aids for patient engagement in research are based on healthcare decision aids and use the same type of format to help make a decision. Like healthcare decision aids, this decision tool is divided into five sections:

  1. Introduction (Get the Facts) – An introduction to patient engagement, patient oriented research and clinical trials in general, including some topics you may consider such as the different roles a patient may take on as a partner in research, potential time and cost, etc.
  2. My Priorities (What are My Priorities) – Tools to help you decide the priority areas in which you could see yourself engaged as a patient partner on a research team.
  3. Learn More (Resources for Engaging) – A section that shares information about the Research Process/Lifecycle to learn more about being part of the research team, including the research process, potential stages of involvement, evaluating the experience of being included as a patient partner, compensation, and others.
  4. My Readiness (Comparing My Priorities with Perceived Benefits/Risks) – Aligning your priorities with the perceived benefits and risks of engaging as a patient partner on a research team.
  5. My Decision (Next Steps)– Making your final decision and potential next steps if you feel you are ready to be engaged.

Click on each section below to read and learn more about that topic area.

FAQs

Why would I use this decision aid?

Who are Patients?

What is Patient-Oriented Research?

What are Clinical Trials?

How Can Patient Partners Contribute to Clinical Research and Clinical Trials?

What are some Motivations to be a Patient Research Partner?

What are Potential Roles for Patient Partners on a Research Team?

Expense Reimbursement and Compensation

What about Time Commitment for Patient Partners?

What are some Potential Benefits and Risks of Being a Patient Partner?

What are the Levels of Public or Patient Participation and Engagement?

Where can I find a research glossary?

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