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Patient Engagement in Pediatric Rheumatology Research

Authors :
Melanie Kohlheim
Vincent Del Gaizo
Source :
Rheumatic diseases clinics of North America. 48(1)
Publication Year :
2021

Abstract

Patient engagement in pediatric rheumatology research can ensure protocol acceptability, project relevance, facilitate a successful study, and share results with the community. Research partners can collaborate along the entire continuum of research, contributing both lived and professional experience with roles as small as a single point-in-time consultation to as large as multi-year shared leadership. Patient and caregiver partners can be found in the myriad of places-the clinic, in advocacy organizations, on social media, and through networking with existing patient partners. Patient engagement begins with relationship building and requires effective training of both researcher and patient family.

Details

ISSN :
15583163
Volume :
48
Issue :
1
Database :
OpenAIRE
Journal :
Rheumatic diseases clinics of North America
Accession number :
edsair.doi.dedup.....587dd803363ba28b8a8bff56fb28af39