A patient-developed paper on what it means to partner in health research
OSSU’s Patient Partners Working Group have been leading OSSU’s work in developing patient-led answers to the questions most pertinent to patient partners in research across Ontario. One of the main issues that kept resurfacing for patient partners in the province was around how individuals are engaged in projects in ways that are meaningful to them. Most academic discourse on this subject, and the SPOR Patient Engagement Framework, build on the idea of spectrums (or ladders) of engagement for patient partnered research projects; from approaches to inform patients at one end of the spectrum to movements to empower patients at the other. In this paper, developed for the Patient Partners Working Group by a Jennifer Johannesen (a patient partner in research herself), the concept of the ‘ladder of engagement’ is investigated from the patient partner lens, rather than the research project lens. In doing so, the paper begins to pose important questions about the way patient partners wish to engage in research, and how they perceive ‘meaningful’ research partnership.
OSSU and the Patient Partners Working Group would like to thank Jennifer Johannesen for her work in pulling together this valuable paper. In addition, OSSU would like to express gratitude to the members of the Patient Partners Working Group, in particular those on the steering committee for this project, without whom this document wouldn’t have been possible.