Patient-Led Research Scorecards-Patient-Led Research Scorecards

Patient-Led Research Scorecards

Pdf Summary

The Patient-Led Research Scorecards aim to integrate patient-generated data and patient-led outcomes research into medical research, fostering more patient-centric comparative effectiveness research (CER). Developed by the Council of Medical Specialty Societies (CMSS) and Patient-Led Research Collaborative (PLRC), these scorecards evaluate collaboration effectiveness across various areas like patient/partner governance, patient burden, research organization readiness, and patient group readiness. They focus on ensuring meaningful decision-making between groups, recognition of biases, collaboration processes, knowledge in disease subject, accountability, and accommodation culture. The scorecards aim to enhance patient-led collaborative efforts by involving patients in all phases of research, addressing patient burden and trauma, ensuring fair compensation, promoting transparency and inclusivity in decision-making, recognizing biases, and promoting a culture of collaboration. Ultimately, the goal is to establish a sustainable model of patient-led CER where patients, research organizations, and funders collaboratively build infrastructure for meaningful patient partnerships. This collaborative approach seeks to elevate the role of patients in shaping research priorities, study design, analysis, publication, and attribution, leading to more inclusive and impactful medical research outcomes.

Keywords

Patient-Led Research

Scorecards

Patient-Centric

Comparative Effectiveness Research

Collaboration

Patient Burden

Governance

Transparency

Inclusivity

Medical Research