Albertans4HealthResearch.ca provides a space where we can collaborate, learn and innovate to advance the science and practice of Patient Engagement in Patient-Oriented Research.
We are passionate about the meaningful engagement that can happen through support, mutual respect and inviting 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.
Ethical Considerations for Partnering in Patient-Oriented Research
Link to document here.
AbSPORU Patient Partner Appreciation Guidelines
Link to document here.
The AbSPORU Patient Engagement Platform runs a series of patient engagement podcasts where we talk with experts about everything patient engagement.
Patient Engagement PEP Talks
Patient Engagement Platform Publications
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.
2018The top research questions asked by people with lived depression experience in Alberta: a survey.
Patient Engagement Platform Journal Club Articles
Click on the month to link to the article.
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."
Supported by the AbSPORU Patient Engagement Platform and others, this online Albertans4Health Research (AB4HR) 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 play an active role, as equal partners, on health research studies that matter to them.
CIHR's Strategy for Patient-Oriented Research recognizes that patient partners contribute valuable lived experiences and unique perspectives and inform and advise on health research studies, making the results more relevant and meaningful to those impacted by the studies, and often able to be implemented sooner, in language and presentation more accessible to all and with greater scope.
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.
We are happy to answer your questions! We offer services and supports to researchers and patients across Alberta. To request help using this online network, email the PE Platform email firstname.lastname@example.org. 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