What Patients and Families Need to Know

For Patients and Families

Patients and families can contribute a lot to health research in Ontario. Their “lived experience“ and perspective on research priorities, questions and results is valuable in ensuring that relevant knowledge is created and used to improve healthcare in Ontario.

But, how can patients and families help?

The information and resources below will help patients and families to better understand what Patient-Oriented Research (POR) is, learn how they can contribute to POR, and engage with health researchers and other partners in improving the relevance and impact of health research in Ontario.

What do patients and families/caregivers need to know?

This presentation walks participants through a discussion on what patients and families need to know about engaging in health research. Links to existing resources on patient engagement are also provided.

Patient stories and health research

This article discusses how patient stories can contribute to health research.

Jargon buster

This glossary of frequently used scientific terms provides a plain language definition to help patients participate in health research discussions.

The importance of integrating narrative into healthcare decision making

This article discusses the importance of including stories in health decision making and in health research. Click here for the full article.

Involving patients in setting priorities for healthcare improvement

This article summarizes the results of an experiment to see if including patients in setting healthcare improvement priorities results in any differences to when health care professionals did it alone.

How to shape and use patient-oriented research at the individual level?

This presentation describes how patients and families can contribute to and use POR at the system level through public and patient engagement opportunities.

What to ask for when trying to shape and use patient-oriented research, what to look for, and where to get it?

This presentation reviews some basic information about health research and how to assess the rigour and relevance of research in the context of POR.