From presentations on how researchers can partner with patients to tools to evaluate the partnership experience, links to external patient-oriented tools and more, OSSU provides a wide range of resources to help research teams conduct patient-oriented research.
The Patients as Partners in Research team, led by Ms. Alies Maybee while working at Patients Canada, developed patient engagement resources based on the experiences and knowledge of patients and family caregivers who have been partners on health research teams.
Partnering with Citizens in Health Research
This presentation will help researchers understand how to partner with patients. It includes the context or basics of patients partnering in research, how to develop a partnership plan, recruiting and on-boarding patients.
Patient Engagement Evaluation Tools
Understanding the patient experience
These evaluation tools comprise a number of surveys developed by the Patients as Partners in Research group. Patients and researchers can use these surveys to evaluate and compare their experiences with patient partnership throughout a research project (initial, mid-project and end-of-project stages) to understand how the partnership evolves. The surveys provide examples of questions and concerns that patient/caregiver partners have when engaged in research and also reflect questions about the actions of researchers who support patient/caregiver partners in research.
Primary Health Care Patient Engagement Resource Centre
Patient Engagement in Primary Care Research
The goal of the Primary Health Care Patient Engagement Resource Centre is to help primary health care researchers in Ontario meaningfully engage patients in their research. The Resource Centre is intended to support primary health care researchers to build patient partnerships to undertake patient oriented research. Click here to join the Primary Health Care Patient Engagement Resource Centre.
Patient and Public Engagement Evaluation Toolkit
In partnership with eight SPOR SUPPORT Units and four leading Canadian Universities, the Centre of Excellence on Partnership with Patients and the Public at the Centre hospitalier de l’université de montréal (CHUM) developed an Evaluation Toolkit to help researchers select appropriate evaluation tools for their patient engagement activities.
Additional Patient Engagement Resources
- CIHR Patient Engagement Framework
- Centre for Excellence on Partnership with Patients and the Public
- Hatching Ideas Hub patient engagement organizations
- Healthy Debate
- Patients Canada