Emerging Guidelines for Patient Engagement in Research.

Area of Science:

• Health Services Research
• Patient-Centered Outcomes Research

Background:

• Patient involvement in developing patient-reported outcome measures (PROMs) is increasingly recognized as crucial for capturing meaningful health outcomes.
• Integrating patients as full patient research partners (PRPs) in outcomes research offers valuable perspectives from researchers, patients, and funders.

Purpose of the Study:

• To describe and discuss diverse experiences of integrating patients as PRPs in outcomes research.
• To highlight the strengths, challenges, and impact of patient-researcher partnerships across the research lifecycle.
• To propose guidelines for establishing effective patient partnerships in outcomes research.

Main Methods:

• Drawing from three real-world examples of patient-researcher partnerships.
• Analyzing experiences from multiple perspectives: researcher, patient, and funder.
• Exploring different approaches to patient engagement in outcomes research.

Main Results:

• Partnerships with patients fundamentally change research conceptualization, conduct, and dissemination.
• Successful patient engagement requires supportive policies, attitudes, strong communication, and shared goals.
• Key principles for partnerships include respect, trust, reciprocity, co-learning, and addressing training needs.

Conclusions:

• Patient research partnerships are vital for patient-centered outcomes research, enhancing the relevance and impact of PROMs.
• Guidelines are provided for establishing and nurturing effective patient-researcher collaborations.
• Further research is needed to identify optimal skills and approaches for successful partnerships.