Patient engagement resources
This guide was co-developed by patient partners, staff at BRIC NS, IWK Health Centre, and the Maritime SPOR SUPPORT Unit. It gives background information about research and patient partner engagement and describes some ways that patients, caregivers, and members of the public can get involved in research.
ENGAGE+ is an online resource co-developed to support participatory research with people experiencing social exclusion in society and under-represented in health research, ultimately reducing the barriers between them and the production of scientific knowledge that concerns them. The website contains explanations of approaches and methods (for example, visual methods), that can promote the participation of individuals and communities affected by social inequalities, precariousness or poverty, social exclusion, and low literacy.
The Primary Health Care Patient Engagement Resource Centre promotes and supports the meaningful and appropriate engagement of patients (meaning people with lived experience of a health issue, their families, friends and caregivers) in primary health care research in Ontario. The materials on their website provide information, resources and methods support to foster partnerships between researchers and patients to conduct research that addresses patients’ needs, preferences and priorities for their health and health care.
The Patient Advisors Network (PAN) is a community of people who have received health services or cared for those who have, and who are committed to improving healthcare as advisors for the good of all across Canada. Together, we can create a greater, collective impact. PAN is a Canadian federally incorporated not-for-profit group. The group is privately funded and looks to attract funding from people and organizations that support their mandate to develop as a group of independent advisors in a community of practice.
In our quest for sustainable and effective care, the Patient and Community Engagement Research (PaCER) unit at the O’Brien Institute for Public Health (University of Calgary) is working to transform the role of patients in health and health care delivery in ways that are breaking new ground. PaCERs are patient researchers, citizens with a variety of health conditions trained in qualitative health research, who are creating a new collective research voice by patients, with patients and for patients.
Understanding Research is a website that aims to develop a common language and a shared understanding among all stakeholders involved in Patient Oriented Research. Co-developed by the Method Developments and the Research Strategy in Partnership with Patients and the Public components of the Quebec SPOR Support Unit, the website contains textual and video introducing science and research, research ethics, literature reviews, research methodologies, big data, and knowledge translation.