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Patients as research partners in preference studies: learnings from IMI-PREFER
Meredith Y Smith1,2, Rosanne Janssens3, A Cecilia Jimenez-Moreno4,5
1Evidera, Inc, PPD, a Part of Thermo Fisher Scientific, 6 Plainfield Street, Boston, MA, 02130, USA. tantmieux57@gmail.com.
Research Involvement and Engagement
|April 7, 2023
Summary
Patient and public involvement (PPI) in patient preference research improved study quality and transparency. Key barriers included resources and time, while clear purpose and multiple partners facilitated PPI effectiveness.
Area of Science:
- Patient preference research
- Stakeholder engagement in clinical studies
- Health outcomes research
Background:
- Growing recognition of patient and public involvement (PPI) in patient preference research.
- Limited evidence on the impact, barriers, and enablers of PPI in preference studies.
- The Innovative Medicines Initiative (IMI)-PREFER project incorporated PPI in case studies.
Discussion:
- PPI operationalized across all research phases: design, conduct, and dissemination.
- Varied levels of patient partner involvement observed.
- Positive impacts on research quality, transparency, ethics, and trust.
Key Insights:
- Top barriers: inadequate resources, insufficient time, and role ambiguity for patient partners.
- Top facilitators: clearly stated purpose for PPI and involvement of multiple patient partners.
- Prior PPI experience correlated with greater reported positive impacts.
Outlook:
- Multi-faceted strategies needed to support PPI adoption and integration in preference research.
- Further case studies are required to establish best practices for patient partner involvement.
- Continued research to optimize PPI within patient preference studies.
Keywords:
Medical product decision-makingPatient and public involvement/engagement (PPI)Patient impactPatient involvementPatient preference studyPatient preferencesPatient research partnersMore Related Videos
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