The patient-centered outcomes research (PCOR) online training manual provides discrete steps, tools and resources for research teams at Cystic Fibrosis care centers. The manual helps researchers integrate and maintain patient-partners as equal members on the research team.
The manual was developed with a community advisory board consisting of CF community members, healthcare providers, nonprofit stakeholders, and PCOR researchers.
The training manual is broken down into four guidebooks corresponding to the phases of PCOR research: Prepare, Launch, Implement, and Monitor/Sustain. The PDFs are accessible from the CF Foundation website, linked below.
The authors would like to thank the Cystic Fibrosis Foundation for facilitating creation of this training manual through Community Voice. We also want to thank all the adults with cystic fibrosis, family members, researchers and clinicians who participated in development of the training manual. Additionally, we want to thank Cystic Fibrosis Research, inc. for their support in recruiting for our community advisory board and for being a member of the board as an organizational stakeholder.