IMPACCT Kids' Care: a real-world example of stakeholder involvement in comparative effectiveness research

J Comp Eff Res. 2015 Aug;4(4):351-7. doi: 10.2217/cer.15.24.

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.

Keywords: community networks; comparative effectiveness research; consumer participation; patient engagement; patient-centered outcomes research.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Academies and Institutes
  • Community Health Centers*
  • Community Participation / methods*
  • Community Participation / trends
  • Comparative Effectiveness Research / methods*
  • Comparative Effectiveness Research / trends
  • Humans
  • Interviews as Topic
  • Oregon
  • Patient Outcome Assessment*
  • Patient-Centered Care*
  • Program Evaluation*
  • Research Design