Patient Engagement in Research: A Toolkit for Patient-Family Advisory Councils
This toolkit as created BY patient and family advisors FOR patient and family advisors — and for the healthcare leaders who work with them. Organized around the conceptual model of patient engagement in research, it provides practical guidance for meaningfully involving patients and families throughout the research life cycle — from deciding what topic areas should be prioritized to receive research funding, to developing a research question, designing a study, conducting research, disseminating and implementing results, and finally, evaluation. The project was funded by a Eugene Washington Engagement Award by the Patient-Centered Outcomes Research Institute (PCORI) to support our understanding of how Patient-Family Advisory Councils engage with research. PCORI is an independent, non-profit organization authorized by Congress in 2010 to fund comparative effectiveness research that will provide patients, their caregivers, and clinicians with the evidence needed to make better-informed health and healthcare decisions. PCORI is committed to seeking input from a broad range of stakeholders to guide its work (www.pcori.org).