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Quality of Life Research
Published in: Quality of Life Research 5/2015

Open Access 01-05-2015 | Patient Engagement Special Section

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

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

Published in: Quality of Life Research | Issue 5/2015

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Abstract

Purpose

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

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.
Footnotes
1
Barbara Turner (PI), “Evaluating Methods to Engage Minority Patients and Caregivers as Stakeholders”.
 
2
Don Neuse (PI), “Creating Locally Relevant Health Solutions with the Appreciative Inquiry and Boot Camp Translation Method”.
 
3
Consuelo Wilkins (PI), “Improving Patient Engagement and Understanding Its Impact on Research through Community Review Boards”.
 
4
Holly Witteman (PI), “Applying Methods of User-Centered Design to Achieve Patient-Centered Care”.
 
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Metadata
Title
Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute
Authors
Lori Frank
Laura Forsythe
Lauren Ellis
Suzanne Schrandt
Sue Sheridan
Jason Gerson
Kristen Konopka
Sarah Daugherty
Publication date
01-05-2015
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 5/2015
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-014-0893-3

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