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A Novel Stakeholder Engagement Approach for Patient-centered Outcomes Research.

Katherine K Kim1, Dmitry Khodyakov2, Kate Marie3

  • 1Betty Irene Moore School of Nursing, University of California Davis, Sacramento.

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|August 4, 2018
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Summary

This study introduces a scalable method for engaging diverse stakeholders in patient-centered outcomes research, aligning with Patient-Centered Outcomes Research Institute (PCORI) principles. The approach proved effective, with patients showing favorable opinions on online engagement despite minor challenges.

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Area of Science:

  • Health Services Research
  • Patient Engagement
  • Clinical Data Networks

Background:

  • Patient and stakeholder engagement is crucial for patient-centered outcomes research (PCOR).
  • Current methodologies for scalable engagement in research management, particularly priority setting, are underdeveloped.
  • The Patient-Centered Outcomes Research Institute (PCORI) has established engagement principles to guide this process.

Purpose of the Study:

  • To describe a novel, scalable approach for stakeholder engagement in research management.
  • To align this approach with PCORI engagement principles.
  • To evaluate the approach within a national clinical data research network.

Main Methods:

  • Recruited diverse stakeholders (patients, advocates, clinicians, researchers) from clinical sites and social media.
  • Designed and implemented an engagement strategy mapped to PCORI principles.
  • Utilized online platforms for advisory boards and prioritization panels, with internal and quantitative evaluation.

Main Results:

  • Operationalized PCORI principles using 12 engagement strategies.
  • Convened stakeholder advisory boards and online prioritization panels, with significant patient participation (20/46 advisors, 159/339 panelists).
  • Patients reported a more favorable opinion of online engagement formats, with no significant differences in engagement levels compared to clinicians.

Conclusions:

  • Developed a comprehensive approach for scalable stakeholder engagement in PCOR management.
  • Demonstrated the feasibility and effectiveness of engaging large, representative stakeholder groups.
  • This methodology informs the development of rigorous approaches for trustworthy health research using data networks.