Engaging Patients and Other Non-Researchers in Health Research: Defining Research Engagement.

Area of Science:

• Health Services Research
• Public Health Policy
• Patient Advocacy

Background:

• Patient and consumer activism has transformed research roles, establishing patients as active advisors and leaders in clinical research.
• Government funders in Canada, US, UK, and Australia have advanced patient and stakeholder engagement models.
• A Multi-Stakeholder Engagement (MuSE) consortium was formed to address critical issues and definitions in engaged research.

Purpose of the Study:

• To examine and establish consensus on definitions of research engagement.
• To provide guidance for the growing field of engaged health research.
• To analyze the political, cultural, and ethical rationales for research engagement across different countries.

Main Methods:

• Review of existing literature and definitions of research engagement.
• Analysis of government funding policies and their focus (empirical vs. ethical rationales).
• Examination of the link between societal values and engaged research, particularly in countries with centralized health technology assessment.

Main Results:

• Definitions of engagement reflect political/advocacy roots and vary based on research goals (clinical decisions to health-system level).
• Political and cultural differences influence engagement approaches; some funders prioritize empirical over ethical rationales.
• Ethical rationales are prominent in the literature, and a continuum from clinical decisions to social justice concerns clarifies engagement types.

Conclusions:

• Harmonization of research engagement definitions is recommended for clear examination of elements, methods, and outcomes.
• A clear conceptual foundation is needed for the field of research engagement to advance rigor.
• Recommendations for terminology definitions are provided to clarify the scope and improve comparisons in engaged research.