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Addressing the ALC Issue through Co-Design Work: Tools for Educators and Researchers 

Educators and Researchers

“If we do not engage patients as active partners in much of health research, we run the risk of wasting public funds to produce findings that are irrelevant to patients or poorly actionable in the real world of clinical practice. Since patients bear the greatest burden of their disease, it is fair and just that they should be key players in establishing research priorities. We have a moral imperative to ground health research in their unique perspective and experience."

(Patrick, Kebbe & Aubin, 2018) 

As researchers and educators in the healthcare field, it is useful and often imperative to have an advisory group of patients and caregivers with lived experiences of the topic you are focusing on.


On this page, you will find:

  • information on how to form these important partnerships with patients/caregivers

  • co-designed work created by our council (as a result of successful patient/caregiver-researcher partnerships)

  • relevant research papers around ALC practices and delayed hospital discharge

What is Patient-Oriented Research?

Patient-oriented research is a form of investigation/exploration in which patients play an integral role alongside the research team. It involves recognizing that individuals and caregivers with lived experience of an illness have an understanding of their healthcare needs. In addition, they have first-hand experience to help inform the improvement of the quality of care for that patient population. This collaboration allows patients and researchers to form meaningful partnerships; patients become more empowered with knowledge and influence on the research, and researchers gain deeper insights into the specific needs of patients, resulting in a  win-win situation.  

Patient-Oriented Research

How Can I Recruit Patients and Caregivers to Form a Council?

Recruiting Patients

You can start with your own network of people who are embedded in the community with connections to patients/caregivers with lived experiences. To create our council, the research lead, Dr. Kerry Kuluski, worked with hospital leads who had connections to patient and caregiver partners. Dr. Kuluski met with patients and caregivers for informal coffee chats (one-on-one) to connect with these individuals on a personal level and build a foundation for effective patient/caregiver-researcher partnerships. These coffee chats served to create a safe and comfortable space for patients and caregivers to share their insights. They also enabled Dr. Kuluski to gauge these individuals’ comfort and interest in being part of the council.


Co-Designed Work Created by Our Council 

The council was created with the aim of tackling the ALC issue in 3 sequential phases as highlighted below (we are currently in phase three):

Co-Designed Work
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Phase 1:

Launch Patient and Caregiver Advisory Council and co-design Terms of Reference

Phase 2:

Conduct co-design activities, while feeding back materials to decision makers

Phase 3:

Knowledge dissemination through conference presentations, publications, etc.

Phase 4:

Piloting/testing our work in clinical settings

The links below highlight some of our phase two co-design work.

Please visit the Resource Library for more information.​​

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ALC Briefing Note
ALC Intervention Toolkit
Communication Tool

Relevant Research Papers - ALC Practices and Delayed Discharge Processes

Research Papers

We are seeking to collaborate with other research groups to advance our efforts. To partner with us,  please get in touch.

A Call to Action - Be Our Partner

Be Our Partner
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We need you

We are looking for partners to help us pilot our patient-centered solutions to addressing ALC.

To receive more information and to collaborate with us please contact us.

Image by Priscilla Du Preez
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