Patient-Centered Outcomes Research Training Manual: Helping researchers initiate and maintain patient-engaged research teams

Abstract

The goal of this Training Manual is to promote patient engagement by increasing the number of Patient-Centered Outcomes Research (PCOR) research teams and improve the quality of participation of the patients, caregivers and other community stakeholders who engage with researchers. This PCOR Training Manual aims to do this by providing discrete steps, tools, and resources that teams can take to successfully integrate and maintain partners in research. This document is geared towards researchers and healthcare providers working within academic institutions. Because institutional and program environments vary so greatly, it is possible that some guidance may not be applicable in every setting. Our overall goal is that the individual PCOR champions reading these pages will benefit from and use this PCOR Training Manual as a starting point at their institution to help ensure successful engagement of new stakeholders onto the research team. This Training Manual is primarily informed by patients, caregivers, community members and researchers that represent the Cystic Fibrosis (CF) community. The development of this Training Manual was guided by the Quality Implementation Framework (QIF). The QIF identifies four phases of implementation, which we have adapted to the following steps: (1) Prepare, (2) Launch, (3) Implement, and (4) Monitor & Sustain.