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.
Healthexperiences.ca offers a new online health experiences module on patient-researcher partnerships based on qualitative interviews using audio/video recording with 33 patients, caregivers and researchers involved in partnered research. This resource presents the topics important to those who shared their stories of partnership, with illustrative clips from the interviews. This material can be used in training sessions about partnerships, in teaching, and as a resource for any/all interested in learning about the benefits and challenges of working together throughout the research life cycle.
Partnering with Citizens in Health 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.
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.
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.
Patient Engagement in Primary Health Care Research
Patient Expertise in Research Collaboration
The goal of Patient Expertise in Research Collaboration (PERC) is to help primary health care researchers in Ontario meaningfully engage patients in their research. PERC is intended to support primary health care researchers to build patient partnerships to undertake patient oriented research. Click here to visit the PERC website.
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
- Patient engagement decision aids – Clinical Trials Ontario
- Hatching Ideas Hub patient engagement resources
- CIHR Patient Engagement Framework
- Centre for Excellence on Partnership with Patients and the Public
- Healthy Debate