Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute

Lori Frank, Laura Forsythe, Lauren Ellis, Suzanne Schrandt, Sue Sheridan, Jason Gerson, Kristen Konopka, Sarah Daugherty

Research output: Contribution to journalArticle

Abstract

Methods: The Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to fund patient-centered comparative effectiveness research. Requirements for research funding from PCORI include meaningful engagement of patients and other stakeholders in the research. PCORI’s approach to engagement in research is guided by a conceptual model of patient-centered outcomes research (PCOR), that provides a structure for understanding engagement in research.

Results: To understand and improve engagement in research PCORI is learning from awardees and other stakeholders. Those efforts are described along with PCORI’s capacity building and guidance to awardees via the Engagement Rubric. PCORI’s unique model of engaging patients and other stakeholders in merit review of funding applications is also described. Additional support for learning about engagement in research is provided through specific research funding and through PCORI’s major infrastructure initiative, PCORnet.

Conclusion: PCORI requires engagement of stakeholders in the research it funds. In addition PCORI engages stakeholders in activities including review of funding applications and establishment of CER research infrastructure through PCORnet. The comprehensive approach to engagement is being evaluated to help guide the field toward promising practices in research engagement.

Purpose: To provide an overview of PCORI’s approach to engagement in research.

Original languageEnglish (US)
Pages (from-to)1033-1041
Number of pages9
JournalQuality of Life Research
Volume24
Issue number5
DOIs
StatePublished - May 1 2015

Keywords

  • Comparative effectiveness research
  • Patient engagement
  • Patient-centered outcomes research
  • Research funding
  • Stakeholder engagement

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

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    Frank, L., Forsythe, L., Ellis, L., Schrandt, S., Sheridan, S., Gerson, J., Konopka, K., & Daugherty, S. (2015). Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute. Quality of Life Research, 24(5), 1033-1041. https://doi.org/10.1007/s11136-014-0893-3