Patient/Partner Governance and Patient Burden-Patient/Partner Governance and Patient Burden

Video Transcription

Video Summary

The video transcript discusses the development of a comprehensive set of scorecards by the CMSS and PLRC team to evaluate patient-led research collaborative efforts. The scorecards focus on aspects such as research organization readiness, integration into the research process, patient partner governance, and patient burden. The team aims to support patient-led research and encourage meaningful collaboration between patients, researchers, and the medical community. The scorecards are designed to assess the level of patient engagement and decision-making power shared between patient groups and research partners. The team also plans to explore strategies for improvement and incentivizing research groups to adopt patient-led methods. The team advocates for open science principles and values giving back information and knowledge to study participants. Future webinars will focus on improving scores based on the current assessments using the scorecards. The team also plans to publish the results academically and explore ways to connect patient engagement levels to research impact factors.

Keywords

patient-led research

scorecards

research collaboration

patient engagement

open science

governance

research impact

incentivizing

webinars