Table 2 Comparison of Maritime SPOR SUPPORT Unit design criteria for focus and discussion groupsa
Level of Distinction | Characteristic | Focus Groups | Discussion Groups |
|---|---|---|---|
High | Type of participant | Research participant - An individual whose data, or responses to interventions, stimuli, or questions by a researcher are relevant to answering a research question; also referred to as “human participant,” and in other policies/guidance as “subject” or “research subject” | Patient Contributor – An individual who possesses relevant personal experience of the health condition in question, and/or as a caregiver. Patient contributors draw on this experience to inform research decision making |
High | Purpose | Qualitative research method for data collection on the knowledge, attitudes, and experiences of participants through group interaction | Tool for patient engagement to draw on patients’ expertise to inform aspects of research or project decision-making |
Medium | Prior consultation and/or approval | Required – Project principal investigator; appropriate institutional research ethics board (REB) | Required – Project principal investigator; patient engagement/facilitation expert |
Low | Monitored | Required – Project principal investigator or approved research team member | Required – Project principal investigator or approved research team member; patient engagement expert |
Low | Identification of participants | Participants are formally recruited and invited to participate based on their shared experiences as related to research objectives | Patients are invited to participate based on their lived experience and expertise relevant to the project objectives |
Low | Location | Location must be approved by REB. Public locations such as community centers or libraries are ideal; private and comfortable locations within academic or institutional settings are alternative options. Video or teleconferencing may also be used | Public locations such as community centers or libraries are ideal; private and comfortable locations within academic or institutional settings are alternative options. Video or teleconferencing may also be used |
High | How information and/or data is collected | With REB approval and informed consent from participants, data collection can be audiotaped, transcribed verbatim, videotaped, or recorded using field notes. Data is collected by a non-participating moderator (e.g. researcher, qualified staff, research assistant, graduate student, etc.) using an interview guide to facilitate discussion | Collaborative and interactive forms of recording are ideal. These can include written transcripts/notes, shared note-taking (e.g. flip-charts), participant notes, and comments through activities (e.g. card storming) |
Low | Compensation | Financial compensation (money or a gift card) is the most common type of incentive for participation. Research participants are compensated at the conclusion of the focus group and each participant receives equivalent payment. Providing a financial incentive offers several benefits, such as: compensating individuals for travel and time, recognizing the value of the participants, decreasing recruitment time, and increasing accountability of participants | MSSU reimburses travel expenses (e.g. mileage, parking) for discussion group contributors. Nationally, SUPPORT Units and Networks are increasingly compensating patients for participation in engagement activities. The amount and form of compensation depends on the nature of the activity in question; for discussion groups, amounts can range from $30 to $50 |
High | How information and/or data is used and/or analyzed | Transcripts, written notes and audio/video recordings (transcribed verbatim) are analyzed using qualitative research techniques. Data analysis may include reading and coding of transcripts, information classification, and identification of quotes and/or examples of themes for research results | Information is used to support research or project decision-making (e.g. a list of patient-made recommendations for researchers), or patients make decisions directly. No data analysis takes place |
High | Research ethics board (REB) review | Required – As outlined by the Tri-Council Policy Statement, approval must be obtained prior to any focus group work (including recruitment, planning sessions, and/or pilot) | Should not be required – The Tri-Council Policy Statement does not cover patient engagement. Patients are involved as subject matter experts to consult on a project and are not research subjects |
Medium | Written statement of intent | Required – Informed consent requires a plain language description of the research project with any further documentation as required under REB approval, which must be delivered to participant(s) prior to participation | Required – A plain language description of the activities and their relation to the research project must be provided prior to participation |
Low | Confidentiality agreement | Required – Describe procedures for maintaining confidentiality in informed consent process | Required – Discuss confidentiality with participant(s) and obtain written or verbal acknowledgment of agreement |
Low | Right to withdraw | Yes, at any time; details subject to REB approval | Yes, at any time |
Medium | Gathering of personal information (PI) | Permitted – PI may be collected during focus groups as approved by REB and provincial privacy legislation | Permitted, for administrative purposes only – PI such as contact information may be collected for administrative purposes with consent |
High | Dissemination | May include written reports, scholarly journal articles, conference presentations, and/or other forms of dissemination | A summary report should be shared with participants, indicating what feedback was taken, what was not, and why |