Engaging consumers in health research: a narrative review

Area of Science:

• Health Services Research
• Public Health
• Health Policy

Background:

• Consumer and Community Engagement (CCE) in research is increasingly recognized for its value in healthcare.
• Despite agreement on CCE benefits, practical guidance on organizational implementation and barrier management is limited.

Purpose of the Study:

• To review existing research and governance material on CCE in health research.
• To discuss findings in light of a case series of engaged consumers to develop practical strategies.
• To chart a way forward for effective CCE in health research.

Main Methods:

• A narrative literature review of 121 identified papers (37 used).
• A case series involving seven research-engaged consumers.
• Exploration of consumer experiences against literature findings.

Main Results:

• Key benefits of CCE include enhanced trust between consumers and researchers and improved research relevance and ethics.
• Identified barriers to CCE are pragmatic, attitudinal, and organizational.
• Outlined enabling factors to leverage CCE benefits and address barriers.

Conclusions:

• Establishing best practice standards, organizational commitment, and resources is crucial for advancing CCE in Australia.
• Effective CCE leads to health research outcomes that better align with end-user priorities and needs.
• Overcoming CCE barriers organizationally facilitates a paradigm shift towards patient- and family-centered care.