Here are some our patient engagement definitions
Strategy for Patient-Oriented Research (SPOR)
An initiative to make health research more relevant to patients, to ensure patients are engaged in research as partners, and to help research findings become quickly adopted into direct patient care. You can learn more about SPOR here.
An overarching term inclusive of individuals with personal experience of a health issue and/or, informal caregivers, including family and friends.
An equal partner on a research team whose valued lived experiences and expertise can inform and advise at all stages of the research cycle including research priorities, study conduct, participant recruitment and retention strategies, data collection and analysis and dissemination of results.
Traditional role of patient as subject/participant in research study.
Patient-Oriented Research (POR)
A continuum of research that engages patients, focusses on patient-identified topics, and/or improves patient outcomes.
Patient engagement in research
Meaningful and active collaboration of patients in any or all phases of research (see Figure 1).
Figure 1. Key stages in the research lifecycle
At the Patient Engagement Platform, we strive to build community partnerships and research collaborations that enhance health research opportunities and outcomes across Alberta. We integrate efforts to better hear and include the voices of all Albertans in the health research that matters to them. Our partners include Alberta Health Services (AHS) Strategic Clinical Networks (SCNs), community organizations, rural networks, patient groups, post-secondary research institutions and others across the province.
Working with communities on projects that matter to them, helps identify and prioritize relevant research questions as well as build research capacity and create mentorship opportunities in diverse and valued communities. We are excited about the Immigrant Youth Mental Health (IYMH) project which seeks to identify and prioritize questions and concerns that Alberta’s immigrant communities have about youth mental health. Led by the PE Platform, this project is a collaboration with United Voices, Immigrant Services Calgary, and the Mental Health Commission of Canada.
The aim of the project is to identify the unanswered questions about youth mental health in Alberta’s newcomer communities. The results of this priority-setting project can help guide future research, be available for mental health advocacy, and serve as a framework for future collaborations. The results may also help inform more culturally appropriate mental wellness policy and practice.
Based on a modified James Lind Alliance for priority setting and public participation, this collaboration with Addictions and Mental Health Strategic Clinical Network (AMH SCN) and the Canadian Depression Research Intervention Network (CDRIN) focused on gathering ‘uncertainties’ in depression research from the perspective of persons with lived experience, carers/caregivers and clinicians.
The project looked to develop a top ten priority list as identified by those impacted by depression in Alberta. Considered a demonstration project as resources (people, money) provided with goal to evaluate input, impact and value of the PE Platform.
More about this project can be found here.
“BedMed” is a clinical research study to determine if changing the time of day that hypertension medication is taken makes a difference for patients with high blood pressure. Before the study began, BedMed team members met with the PE Platform and initiated the Patient Working Group to aide in study process.
The PE Platform contributed valued support including coaching, mentorship, and capacity building in those with lived-experience of hypertension to inform and advise on the study strategy, participant recruitment and retention, and dissemination.
This collaboration with the Critical Care Strategic Clinical Network (CC SCN) is generating new knowledge to empower critically ill older patients and their families to advocate for care that reflects their needs and to build knowledge translation (KT) capacity that helps to ensure care is informed by the best evidence.
Learn more about this Family-Partnered Care Pathway here
This Pan Canadian project focused on research priorities as identified by kidney disease and transplant patients (James Lind Alliance partnership).
The Can–SOLVE CKD Network aims to overcome the challenges preventing the uptake of research evidence into practice. Can–SOLVE CKD is one of five chronic disease networks funded by the Canadian Institutes of Health Research (CIHR) through the Strategy for Patient-Oriented Research (SPOR).