Sharpening the focus: differentiating between focus groups for patient engagement vs. qualitative research

Area of Science:

• Health systems research
• Patient-oriented research
• Qualitative research methodology

Background:

• Patient engagement is crucial in patient-oriented research (POR) but often confused with research activities.
• Canadian health systems researchers and research ethics boards (REBs) lack clarity on differentiating focus groups for research versus patient engagement.
• Canada's Strategy for Patient-Oriented Research (SPOR) emphasizes patient engagement, necessitating clear methodological distinctions.

Purpose of the Study:

• To differentiate between focus groups used for qualitative research and those used for patient engagement.
• To provide clear guidelines for using distinct terminology (focus groups vs. discussion groups) to improve clarity in research planning and ethics submissions.
• To support the appropriate implementation of patient engagement within the framework of SPOR.

Main Methods:

• Distinguishing between research activities (focus groups) and patient engagement activities (discussion groups).
• Developing internal guidelines for the design and conduct of both focus groups and discussion groups.
• Comparing and contrasting theoretical frameworks, REB review, participant identification, data collection/analysis, rigor, and dissemination for both types of groups.

Main Results:

• Using distinct terms like 'focus groups' for research and 'discussion groups' for patient engagement enhances clarity.
• The Maritime SPOR SUPPORT Unit developed guidelines to encourage the appropriate use of discussion groups for patient engagement.
• Clearer distinctions improve research planning and submissions to research ethics boards.

Conclusions:

• The developed guidelines address a key methodological challenge in patient-oriented research.
• Implementing distinct terminology and guidelines benefits Canadian and international health systems researchers, patients, and REBs.
• This approach supports the effective integration of patient engagement in health research.