Learning to Swim with the Experts: Experiences of Two Patient Co-Investigators for a Project Funded by the Patient-Centered Outcomes Research Institute

摘要

The Patient-Centered Outcomes Research Institute (PCORI), established in 2010, launched a new model of incorporating stakeholder perspectives into health care research. To ensure that PCORI-funded studies address issues important to health care consumers, all projects must fully involve patients and other stakeholders in every step of the research process: from planning and design to implementation and dissemination of results.As members of the first cohort of PCORI-funded researchers, our team was on the forefront of developing new approaches to engaging patients in research. One innovation we pioneered was the creation of a “patient co-investigator” role for two nonscientists who were recruited to be active members of the research team throughout the project. This commentary, based on our experiences, aims to help other research teams to 1) understand how to effectively collaborate with stakeholder team members such as patients; 2) anticipate possible challenges; and 3) offer tools for the orientation, training, and integration of patients into a scientific team. Written from the perspective of two PCORI patient co-investigators, our commentary provides lessons learned and recommendations about incorporating nonscientists into research teams.Specifically, we suggest recruiting people with a record of relevant volunteer experience and commitment; establishing a formal application process that provides candidates with details about expectations and responsibilities; and providing comprehensive orientation with ongoing training, encouragement, and support. We hope the points in this commentary help research teams that are incorporating patient co-investigators move toward a positive and productive experience.