Albertans4HealthResearch.ca

   Patient Engagement Resources      

We are passionate about the meaningful engagement that can happen through support, mutual respect and inclusion of diverse perspectives. We believe that by working together with patients, caregivers, family members and friends with personal experiences of health issues or the healthcare system, we can make healthcare research more accessible and relevant to all Albertans.

"Who is a Patient?" / "Qui est un Patient?" (Video)
We are all considered 'patients' in health research.
Check out our 60-second animated video to learn why!
English or French

AbSPORU, Ethical Considerations Partnering in Patient-Oriented Research
Link to document here.

CIHR, Ethics Guidance for Developing Partnerships with Patients and Researchers
Link to document here.

AbSPORU, Compensation Guidelines for Patient Partners
Link to document here.

CIHR, Considerations when paying patient partners in research
Link to document here.

PEP Talks
The AbSPORU Patient Engagement Team runs a series of patient engagement podcasts where we talk with experts about everything patient engagement.
Patient Engagement PEP Talks

YouTube Channel for the AbSPORU Patient Engagement Team
Patient Engagement YouTube Channel

"How-to" Guides for Patient Partnership
Researcher How-to Patient Engagement Guide
Patient Partner How-to Patient Engagement Guide

Patient Engagement Journal Club Articles and Recordings
Click on the month to link to the article.

February 2022 Citizen and stakeholder led priority setting for long-term care research: identifying research priorities within the Translating Research in Elder Care (TREC) Program
Recording available here: February 16, 2022

January 2022 Development and pre-testing of the Patient Engagement in Research Scale (PEIRS) to assess the quality of engagement from a patient perspective
Recording available here: January 19, 2022

December 2021 Development and evaluation of a parent advisory group to inform a research program for knowledge translation in child health
Recording available here: December 15, 2021

November 2021 Parent engagement in the co-design of clinical trials: the PARENT trial
Recording available here: November 18, 2021

October 2021 Recruitment of caregivers into health services research: lessons from a user-centred design study
Recording available here: October 20, 2021

September 2021 A Generative Co-Design Framework for Healthcare Innovation: Development and Application of an End-user Framework
Recording available here: September 15, 2021

June 2021 "PATIENT: A tool to assist in creating a Patient-Centred Team Approach to heatlh-care delivery: Lessons from a physician patient"
June 2021 "Determining patient readiness to share their healthcare stories: A tool for prospective patient storytellers to determine their readiness to discuss their healthcare experiences"
Recording available here: June 16, 2021

May 2021"Kidney Check Point-of-Care Testing --Furthering Patient Engagement and Patient-Centred Care in Canada's Rural and Remote Indigenous Communities: Program Report
Recording available here: May 19, 2021

April 2021 "Patients, clinicians and researchers working together to improve cardiovascular health: a qualitative study of barriers and priorities for patient-oriented research"
Recording available here: April 21, 2021

March 2021 "Engaging youth in research planning, design and execution: Practical recommendations for researchers".
Recording available here: March 17, 2021

February 2021 "The Hidden Pathways of Chronic Illness"
Recording available here: February 17, 2021

January 2021 "Lack of patient involvement in care decisions and not receiving written discharge instructions are associated with unplanned remissions up to one year."
Recording available here: January 20, 2021

December 2020 "Recruiting patients as partners in health research: a qualitative descriptive study."

November 2020 "A co-designed framework to support and sustain patient and family engagement in health-care decision making."

October 2020 "Preferences for a self-management e-health tool for patients with chronic kidney disease: results of a patient-oriented consensus workshop."

September 2020 "Guidance on authorship with and acknowledgement of patient partners in patient-oriented research."

June 2020 "Light amid the gloom."
June 2020 "It takes a community to establish core outcomes for research in COVID-19."
June 2020 "The views of patients and the public should be included in policy responses to COVID-19."

May 2020 "Evaluating the "return on patient-engagement initiatives" in medicines research and development: A literature review."

April 2020 "Community initiative co-led with patients could improve care for people with complex health and social needs."

February 2020 "Patient Engagement in research: Early findings from the Patient-Centred Outcomes Research Institute."

January 2020 "Frameworks for supporting patient and public involvement in research: Systematic review and co-design pilot."

October 2019 "Patient and public involvement in research: Enabling meaningful contributions."

Publications from the AbSPORU Patient Engagement Team
Click on the year to link to the article.

2020 Patient reports of night noise in hospitals are associated with unplanned readmissions among older adults

2020 "The role of patient advisory councils in health research: Lessons from two provincial councils in Canada."

2018 "Patient and public engagement in priority setting: A systematic rapid review of the literature."

2018 "People with lived experience (PWLE) of depression: describing and reflecting on an explicit patient engagement process within depression priority setting in Alberta."

2018 "Patient engagement in Canada: a scoping review of the 'how' and 'what' of patient engagement in health research."

2018" "The top research questions asked by people with lived depression experience in Alberta: a survey."

     About Us      

Supported by the AbSPORU Patient Engagement Team and others, the Albertans4Health Research (AB4HR.ca) network is a place for those with lived experience of a health condition, either themselves or as a caregiver, family member or friend, to connect with research teams and engage as active and equal partners on health research teams.

CIHR's Strategy for Patient-Oriented Research recognizes that patient partners contribute valuable lived/living experience and unique perspectives essential to informing health research studies. Patient engagement makes research results more relevant and meaningful to those studies are intended to benefit. As well, findings are  often able to be implemented sooner, and in language and formats more accessible to more communities and populations.

You will see Research Opportunities here on this main page. Please connect with the researchers directly about projects you are interested in.

You can also "Volunteer"  and receive regular emails about different research opportunities, and the AB4HR activities and events; sometimes we might ask for your opinions and insights regarding our work. This online network uses the term "Volunteer" because of the universal volunteer management software. Yes, you would be volunteering your time if you applied to and are accepted to an opportunity but  reimbursement is available for out-of-pocket expenses and compensation may also be offered for your valued lived experience and expertise.

     Contact Us      

We are happy to answer your questions!

We offer services and supports for researchers and patients across Alberta. If you have questions or are looking to access services or supports, please email the AbSPORU Patient Engagement Team peplatformab@gmail.com Please leave provide a phone number if you would like us to call you back. We are happy to do so!

Doing research in Alberta? Apply online for research services and support through  AbSPORU.ca 

          "Be the change that you wish to see in the world."   Mahatma Gandhi