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

PLAIN ENGLISH SUMMARY: Patient engagement is an opportunity for people with experience of a health-related issue to contribute to research on that issue. The Canadian Strategy for Patient-Oriented Research (SPOR) highlights patient engagement as an important part of health research. Patient engagement, however, is a new concept for many researchers and research ethics boards, and it can be difficult to understand the differences between patient engagement activities and research activities. Focus groups are one example of how research and patient engagement activities are often confused.We distinguish these two types of activities by using different terms for each. We use focus groups to refer to research activities, and discussion groups to refer to patient engagement activities. In focus groups, researchers collect data by speaking with a group of research subjects about their experiences. Researchers use this information to answer research questions and share their findings in academic journals and gatherings. In patient engagement, discussion groups are a way for patients to help plan research projects. Their contributions are not treated as research data, but instead they help make decisions that shape the research process. We have found that using different language to refer to each type of activity has led to improved clarity in research planning and research ethics submissions. ABSTRACT: Background In patient-oriented research (POR), focus groups can be used as a method in both qualitative research and in patient engagement. Canadian health systems researchers and research ethics boards (REBs), however, are often unaware of the key differences to consider when using focus groups for these two distinct purposes. Furthermore, no one has clearly established how using focus groups for these two purposes should be differentiated in the context of Canada's Strategy for Patient-Oriented Research (SPOR), which emphasizes appropriate patient engagement as a fundamental component of POR. Body Researchers and staff in the Maritime SPOR SUPPORT Unit refer to focus groups in patient engagement as discussion groups for clarity, and have developed internal guidelines to encourage their appropriate use. In this paper, the guidelines comparing and contrasting the design and conduct of focus groups and of discussion groups is described, including: the theoretical framework for each; the need for research ethics board review approval; identifying participants; collecting and analyzing data; ensuring rigour; and disseminating results. Conclusion The MSSU guidelines address an important and current methodological challenge in patient-oriented research, which will benefit Canadian and international health systems researchers, patients, and institutional REBs.