Patient-Researcher Partnerships

This module is available in English only.

Our health experiences team is working to secure funds so that all of our materials will, one day, be available in English, French, and, eventually, other languages. In the meantime, our YouTube clips offer an auto-generated closed captions feature which may or may not be wholly accurate. Thank you for your understanding. 

About this module

Patient-researcher partnerships are relatively new and may be challenging to navigate for all involved. This module contains information to help support patients, caregivers and researchers interested in learning about working collaboratively as partners on research projects. Patient-research partnerships can be beneficial in helping to identify priorities for what gets studied in research, and how. Results from research that engage patients and families are more likely to be relevant to patients’ needs and to improve patient care.

This module, featuring patient, caregiver and researchers’ experiences of partnership was created to help people understand how others have worked in partnership, what has worked, some of the barriers, and advice for others. Funders, policy makers and those involved in teaching about partnerships may also be interested in this material.

You can listen below to an introduction by Julie Drury, Former Chair of the Patient and Family Advisory Council for Ontario, sharing her perspectives on the importance of patient-researcher partnerships.

This module on patient-researcher partnership is based on research by the Canadian Health Experiences Group.

 

What can I find here?

The information on this website has been organized according to the different topics that were important to the interviewees. On the left-side tool bar, you will find categories containing information on getting started, being involved, perspectives on debates and challenges, and thoughts about the future. There are also links to resources that you might find useful. You can decide and select which topics you would like to explore from left tool bar, in no particular order. Take your time to explore the site, dip in and out of it if you like, rather than trying to review everything in one go.

For more information, please visit our Frequently Asked Questions page.

Definitions  

Patient

A patient is someone who has lived experience of an illness or condition whether they are currently under care, or have been in the past. For the purposes of this project, we sometimes use the term ‘patient’ to refer to patients, caregivers, family members and/or friends. In addition, some of the people we interviewed in this project are community partners (who are not patients or family members but citizens or members of the public).

Patient Partner

Our reference to ‘patient partners’ includes those patients, caregivers or family members who are engaged in or leading research as members of a research team, or an integral part of the process to design, conduct, analyze and/or communicate the findings. This means that the research is being done ‘with’ or ‘by’ them and not ‘for’ them. Patient partners are well positioned to contribute their expertise and perspectives given their lived experience. Not everyone wants to be involved in all aspects of research as a partner, but we recognize all contributions to research projects as partners.

 

Being a partner in research when you are a patient or caregiver is different than being a participant or subject in a research study, where, for instance, as a patient recruited to participate in a study, you or your family members might be asked for your consent to respond to a survey or be interviewed, or be asked to offer a blood sample, to collect data ‘about’ you.

Partnership in Research

The Canadian Strategy for Patient-Oriented Research (SPOR) endorses the active partnership of patients, researchers, health professionals and decision-makers in research in order to build a sustainable and accessible health care system that optimizes the health of Canadians. In other words, this research approach is intended to promote a better health system and better health outcomes. You can read more about this strategy here: https://cihr-irsc.gc.ca/e/41204.html. SPOR’s slogan “Putting patients first” implies that the priorities of patients are most important and should be used to set the research agenda. SPOR’s goal aligns well with Canada’s Triple Aim Framework: better health, better health care, better value. The intent is to promote research that is being conducted ‘with’ or ‘by’ patients and other relevant stakeholders, rather than ‘for’ them.