Our novel demonstration project that is part of the pan-Canadian Strategy for Patient-Oriented Research (SPOR) explores how patients and family caregivers can partner in health research. The Patients as Partners in Research team is comprised of engaged, informed and independent patients and family caregivers who are partnering with a number of different research teams. In creating these tools they drew from their experiences and knowledge as partners on health research teams and from their experiences more broadly.
These practical tools can help strengthen understanding and collaboration among patient and researcher partnerships. Looking forward, the team will develop evaluation tools to improve patient partnership in health research.
Guidelines for Patient Partnership in Health Research
These Guidelines were created to help prepare patients for the initial discussions with research teams and the Principal Investigator (PI) for the project. Patient and caregivers on a research team have a role in planning the project, even if the project is quite well-defined when patients join the team.
The research community typically looks to 'best practices' for direction, however the Patients as Partners in Research team came to understand that each partnership is unique, and while the stages of health research are fixed, the relationship is not.
Partnering with Citizens in Health Research - Researcher Orientation to Patient Partnership
The Researcher Orientation workshop is designed to help bridge the gap between the researcher community's 'uneven' understanding of how to partners with patients. In the process of partnering, the Patients as Partners in Research team discovered specific things that they would have liked researchers to know before partnering, which is reflected in this tool.
This material covers the context or basics of patients partnering in research, how to develop a partnership plan, and recruiting and on-boarding patients.
Citizens Partnering in Health Research - Patient Orientation to Partnering in Health Research
The Patient Orientation is designed to be used as a workshop with patients to orient them to the world of research and brief them on a specific project. As new partners on health research teams, patients and caregiver partners are exposed to new processes, protocols, and new language and terminology, among other things.
The Patients as Partners in Research team developed this material to share what they had learned on the ground, focusing on what they would have liked to know prior to partnering. It covers why patients should be involved, what it means to partner in research, and understanding the project and role within the project. The latter material specific to the project is to be interjected by the Principal Investigator for the specific project.
In order to evaluate the experience of partnership, we have developed three surveys for researchers and three for patient partners in health research. These surveys are examples of the questions and concerns that patient/caregiver partners have in research for fellow patient/caregiver partners. The surveys also reflect questions about the actions of researchers that would be most helpful and supportive for patient/caregiver partners in research.
Three surveys (initial, mid project and end of project) form a set designed to see how the partnership changes over the duration of a project for patients/caregivers and, in a separate set, for researchers. The questions in the two sets of surveys are aligned so that some comparisons can be made between the experiences of researchers and that of patient/caregiver partners.