"Proteus" Patient-reported Outcomes Tools: Engaging Users & Stakeholders

PI: Claire Snyder, PhD
Funders: Genentech (current) & Patient-Centered Outcomes Research Institute (PCORI) (former)
Status: Ongoing

Patients and clinicians value information regarding the impact of disease and treatment from the perspective of patients, so patient-reported outcome (PRO) assessments are a critical aspect of clinical trials. However, the PRO results from clinical trials can only be used by patients and their clinicians if they are measured appropriately and reported clearly. Methodologic tools to improve the assessment and interpretation of PROs in clinical trials have been developed. PRO optimization requires a coordinated and stakeholder-driven implementation and dissemination strategy to ensure that they are fully applied in practice.

The PROTEUS Consortium has been formed with the primary objective of ensuring that patients, clinicians, and other decision-makers have PRO data from clinical trials to make the best decisions they can about treatment options. To accomplish this objective, the PROTEUS Consortium is partnering with key patient, clinician, research, and regulatory groups from the U.S. and internationally to promote systematic use of methodologic tools developed to optimize the assessment and reporting of PROs in clinical trials. To promote the uptake of these tools and enhance PRO optimization more generally, the Consortium is working with each Consortium partner individually to develop specific strategies for disseminating and implementing the PRO tools in its particular context and addressing relevant barriers and facilitators.

The PROTEUS Consortium met in-person in June 2019 to develop general strategies for disseminating and implementing the PRO tools across stakeholders. The Consortium is now focused on executing the recommended strategies.

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