Patient Governance in a Patient-Powered Research Network for Adult Rheumatologic Conditions.

ABSTRACT:

Background

Patient-Powered Research Networks (PPRNs) are a unique type of patient-powered patient registry for patient-centered outcomes research requiring that stakeholder engagement play a key role in governance (eg, research guidance and decision making). The purpose of this report is to describe the governance structure of a newly formed PPRN and the activities undertaken prelaunch and postlaunch to evaluate and improve the engagement of patient stakeholders in governance.

Methods

During the 18-month start-up period of ArthritisPower, a PPRN for adult rheumatologic conditions, 12 members of the patient body of the PPRN governance completed a 12-item preassessment and postassessment based on the Patient-Centered Outcomes Research Institute (PCORI) Engagement Rubric. The a

SUBMITTER: Nowell WB 

PROVIDER: S-EPMC6143204 | biostudies-literature | 2018 Oct

REPOSITORIES: biostudies-literature