Protocol for co-producing a framework and integrated resource platform for engaging patients in laboratory-based...

Area of Science:

• Translational science
• Patient-centered research
• Preclinical research methodologies

Background:

• Patient engagement is crucial for aligning research with patient values but is underutilized in preclinical laboratory settings.
• Limited guidance and examples exist for implementing patient engagement in preclinical research.
• This study addresses the gap by proposing a framework for preclinical patient engagement.

Purpose of the Study:

• To develop a comprehensive, empirically-derived, and stakeholder-informed process framework for patient engagement in preclinical laboratory research.
• To provide guidance, best practices, and standardized procedures to facilitate patient engagement in preclinical settings.
• To enhance the impact of preclinical research by incorporating patient perspectives.

Main Methods:

• Establish a 'deliberative knowledge space' for semi-structured discussions with researchers and patient partners.
• Identify key actions, activities, barriers, and enablers for preclinical patient engagement.
• Refine the draft framework using an international consensus-building Delphi survey and pilot field tests with research groups and patient partners.

Main Results:

• Development of a draft process framework for preclinical patient engagement.
• Identification of critical factors influencing patient engagement in laboratory research.
• Evaluation of the framework through pilot testing with research teams and patient partners.

Conclusions:

• The developed process framework will offer standardized guidance for patient engagement in preclinical laboratory research.
• Facilitating patient engagement in preclinical settings represents a novel opportunity to increase research impact.
• The framework aims to foster collaboration and ensure patient-oriented values in early-stage research.