FAQ

Frequently Asked Questions – Tips on how to navigate this module

In this FAQ, we provide responses to the following most commonly asked questions about this module:

  1. Who was this module developed for and what can I learn from this module?
  2. How do I navigate the topic pages?
  3. What topic pages might be of interest to me if…
  4. How can I view specific content from patients, caregivers and/or researchers?
  5. I am a patient/caregiver and interested in getting involved in a patient-researcher partnership. Who can I contact to find current opportunities?
  6. What is the difference between a patient and patient partner?

Who was this module developed for and what can I learn from this module?

This module was developed for anyone who might be interested in hearing about others’ experiences of patient-researcher partnerships. More specifically, the module was developed for the following uses:

  • To promote learning from the experiences of patients/caregivers and researchers who have been involved in patient-researcher partnerships for individuals who are new to partnerships or have had previous experience
  • To provide patients/caregivers and researchers with suggestions on what to consider and how to prepare for a partnership
  • To provide examples of the benefits and challenges of patient-researcher partnerships and highlight where there is room for improvement
  • To support education and training about patient-researcher partnerships and meaningful discussion and reflection about creating more meaningful involvement in partnerships

How do I navigate the topic pages?

On the left side of each topic page you will see six overarching themes – Getting Started, Being Involved, Impact, Debates & Challenges, Advice to Others, Thoughts about the Future – with 18 different topic pages listed across the six themes.

Click on any of the topic pages to view video, audio, or text from patients, caregivers, and researchers who have shared their experiences related to each topic. Each topic page is organized into subheadings that are listed at the top of each topic page. Click on the sub-heading of interest and you will be directed to the associated content.

What topic pages might be of interest to me if…

How can I view specific content from patients, caregivers and/or researchers?

You can click the ‘People’ tab located on the top navigation bar and use the filter function to select the specific group of individuals (i.e., patients, caregivers, researchers or patient/caregiver-researchers) that you would like to view.

Once you make your selection, you will see a list of profiles that match your request. Click on each person to view their profile and selected video, audio, and/or written clips from the module.

I am a patient/caregiver and interested in getting involved in a patient-researcher partnership. Who can I contact to find current opportunities?

Across the nation at any given time there are many opportunities to engage as a partner in research. We suggest that you contact local organizations, hospitals, and/or universities and inquire about current patient partner opportunities. Refer to the links below to help get you started:

To hear others’ experience about how patients were engaged by researchers as partners in research, please read the ‘Developing Partnerships’ topic page listed under ‘Getting Started’ in our module.

What is the difference between a patient and patient partner?

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.

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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.