|Adolescents and Young Adults becoming Physically Active after Cancer Trial (AYA-PACT)||1|
|Adult Pressure Injury Prevention in Hospital, Patient and Family Advisory Council||1|
|Attachment and Child Health (ATTACH™): Implementation Science Study||1|
|Bridging the divide between acute medical care and housing: A comprehensive evaluation of a “medical respite program” for the homeless||1|
|Characterizing the management of premature hospital discharges from a patient, provider, and health systems perspective||1|
|De-Adoption Beta-Blockers in patients with stable ischemic heart disease without Reduced LV ejection fraction, ongoing Ischemia, or Arrhythmias: a pragmaTic randomizEd trial (ABBREVIATE)||1|
|Digital storytelling: An intervention model for inclusion and capacity building among youth with developmental disabilities||1|
|Discovering a Framework for Online Information Sharing With Those Living With Cancer: A Classical GroundedTheory Study Using Data Collected Through SemiStructured Interviews and Online Correspondence||1|
|Exploring the perceptions of what characterizes poor versus good health||1|
|Identifying patient-important quality indicators for patients admitted to neurology units||1|
|Improving Person-Centred Primary Care in Alberta: Co-designing Strategies to Implement Person-Centred Quality Indicators||1|
|Minimally Invasive Cardiac Surgery - Quality Improvement||1|
|Primary Health Care Teams Policy Project||1|
|The patient’s perspective: evaluating the meaningfulness, comprehensiveness, and prioritization of common Patient-Reported Outcomes (PRO) in cardiac surgery||1|
|The POMELO (Prevention of MusclE Loss in Osteoarthritis) Trial _Patient-advisory team members||1|
|Understanding Patient and Family Perspectives of Accelerated Discharge Planning in the Critically Ill: A Mixed-Methods Study||1|
|Virtual Reality as a Teaching Tool for Patients with Diabetes||1|
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 Partnering in Patient-Oriented Research
Link to document here.
AbSPORU Patient Partner Compensation 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 Team YouTube Channel
Patient Engagement Team 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."
2018" "The top research questions asked by people with lived depression experience in Alberta: a survey."
Patient Engagement Journal Club Articles and Recordings
Click on the month to link to the article.
June 2021 "PATIENT: A tool to assist in creating a Patient-Centered 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."
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