IMPACCT Kids' Care: a real-world example of stakeholder involvement in comparative effectiveness research.
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.
Department of Family Medicine, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Portland, OR 97239, USA.
Sonja
S
Likumahuwa-Ackman
Department of Family Medicine, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Portland, OR 97239, USA.
Heather
H
Angier
OCHIN, Inc., 1881 SW Naito Parkway, Portland, OR 97201, USA.
Aleksandra
A
Sumic
Department of Family Medicine, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Portland, OR 97239, USA.
Rose L
RL
Harding
Department of Family Medicine, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Portland, OR 97239, USA.
Erika K
EK
Cottrell
Department of Family Medicine, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Portland, OR 97239, USA.
Deborah J
DJ
Cohen
OCHIN, Inc., 1881 SW Naito Parkway, Portland, OR 97201, USA.
Christine A
CA
Nelson
Department of Family Medicine, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Portland, OR 97239, USA.|Department of Medical Informatics & Clinical Epidemiology, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Portland, OR 97239, USA.|Oregon Clinical & Translational Research Institute, SN4N, 3181 SW Sam Jackson Park Rd, Portland, OR 97239, USA.
Timothy E
TE
Burdick
Department of Family Medicine, The Ohio State University, 2231 N. High St, Columbus, OH 43201, USA.
Lorraine S
LS
Wallace
Oregon Health Authority Office of Health Analytics, 421 SW Oak St, Suite 850, Portland, OR 97204, USA.
Charles
C
Gallia
Department of Family Medicine, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Portland, OR 97239, USA.|OCHIN, Inc., 1881 SW Naito Parkway, Portland, OR 97201, USA.
Jennifer E
JE
DeVoe
D000047:Academies and Institutes; D003151:Community Health Centers; D003256:Community Participation / Q000379:methods* / Q000639:trends; D057186:Comparative Effectiveness Research / Q000379:methods* / Q000639:trends; D006801:Humans; D007407:Interviews as Topic; D009922:Oregon; D063868:Patient Outcome Assessment; D018802:Patient-Centered Care; D015397:Program Evaluation; D012107:Research Design
community networks; comparative effectiveness research; consumer participation; patient engagement; patient-centered outcomes research