Table 2 Responsibilities (“Scope of Work”) of the HCV-PEG [6]
From: Experiences of an HCV Patient engagement group: a seven-year journey
• Attend and actively participate in up to 6 meetings per year | |
• Share perspective of patient or research participant | |
• Secure access to computer and printer in your local area in order to review/edit study documents | |
• Review study documents, providing suggestions and feedback | |
• Assist investigators develop study design features | |
• Select and finalize patient surveys and measures | |
• Test the web-based data capture system and other elements of data collection | |
• Participate in conference calls when requested | |
• Review ongoing study progress | |
• Provide feedback on how to modify and improve the research plan | |
• Offer solutions to solve recruitment, consent, enrollment, retention challenges | |
• Identify mediums for the dissemination of study findings to the lay public such as social media outlets, community engagement, and patient advocacy organizations | |
• Provide feedback on data analysis, interpretation, and scholarly work (abstracts, papers, presentations) | |
• Ensure project meets enrollment and completion timelines and study milestones | |
• Attend Kick-Off meeting and host a Patient Panel to help investigators learn about the patients’ perspective | |
• Participate in online training to understand basic clinical research (CITI training [8]) | |
• Review and approve Meeting Minutes | |
Co-Chairs' Additional Responsibilities | |
• Attend meetings and conference calls | |
• Assist with drafting, editing, seeking approval, and distribution of PEG Meeting Minutes to other members and the Steering Committee | |
• Work with investigators to draft documents requested by PCORI for progress reports and final reports | |
• Serve as liaisons between the HCV-PEG and Steering Committee | |
• Foster a reciprocal relationship, bi-directional communication, and sharing of information between the larger HCV-PEG and the investigators | |
• Bring the collective views of the larger HCV-PEG to the investigators | |
• Provide updates to the HCV-PEG on investigator and Executive Committee decisions, study progress and challenges |