IMPACCT Kids' Care: a real-world example of stakeholder involvement in comparative effectiveness research. (August 2015)

• Record Type: Journal Article
• Authors: Likumahuwa-Ackman, Sonja; Angier, Heather; Sumic, Aleksandra; Harding, Rose L; Cottrell, Erika K; Cohen, Deborah J; Nelson, Christine A; Burdick, Timothy E; Wallace, Lorraine S; Gallia, Charles; DeVoe, Jennifer E
• Is Part Of: Journal of comparative effectiveness research. Volume 4:Number 4(2015)
• Page Start: 351
• Page End: 357
• Publication Date: 2015-08
• Subjects: community networks -- comparative effectiveness research -- consumer participation -- patient-centered outcomes research -- patient engagement; Medical care -- Research -- Periodicals; Medical care -- Research -- Evaluation -- Periodicals; Medical care -- Decision making -- Periodicals; Evidence-based medicine -- Periodicals; Medicine, Comparative -- Periodicals; 362.1072
• DOI: 10.2217/cer.15.24
• Languages: English
• ISSNs: 2042-6305

Abstract

The Patient-Centered Outcomes Research Institute has accelerated conversations about the importance of actively engaging stakeholders in all aspects of comparative effectiveness research (CER). Other scientific disciplines have a history of stakeholder engagement, yet few empirical examples exist of how these stakeholders can inform and enrich CER. Here we present a case study which includes the methods used to engage stakeholders, what we learned from them, and how we incorporated their ideas in a CER project. We selected stakeholders from key groups, built relationships with them and collected their feedback through interviews, observation and ongoing meetings during the four research process phases: proposal development, adapting study methods, understanding the context and information technology tool design and refinement.