Methods in Patient Engagement: Discussion & Focus Groups

By Ogai Sherzoi

Published in

KnowledgeNudge

10 min readMar 6, 2020

In this series, Methods in Patient Engagement, we explore participatory approaches found in the Centre for Healthcare Innovation’s Guide to Engagement Methods and share some examples and insights. If you’re not already familiar with our Guide to Engagement Methods (found on our Resources page), read the how-to blog here.

In this post, we discuss discussion (and focus) groups — what they are, how they differ, some steps for planning, and tips/things to remember.

Where Can I Find Discussion Groups in the PE Methods Tool?

The Discussion Group engagement activity/participatory approach is found at the ‘consult’ level of all stages of the research process, from research design to evaluation. Check out our Guide to Engagement Methods on our Resources page to explore for yourself!

Discussion Groups vs. Focus Groups

Though the terms ‘focus group’ and ‘discussion group’ are often used interchangeably, they have distinct purposes and methods. Traditionally, focus groups have been used as a research method — meaning those who take part are research participants, from whom data is collected (with the intent of reporting or publishing the data), and the purpose is to answer a research question. Discussion groups, on the other hand, are used to aid in decision-making around a research study or program, meaning that those who take part are partners in research or even co-researchers. A 2018 article published in BMC’s Research Involvement and Engagement by Doria et al. (Sharpening the focus: differentiating between focus groups for patient engagement vs. qualitative research) provides a useful flowchart (below) for differentiating between these two types of meetings, particularly in the context of determining whether ethics approval should be sought and the appropriate form of consent.

From Doria et al., 2018: https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-018-0102-6/figures/1

Focus Groups

Focus groups are a data collection method used in qualitative research — essentially a group format of ‘one-on-one interviews’. This format allows discussion of interview questions with multiple participants, providing an opportunity for cooperation and synergy in creating ideas, answering questions, and interpreting information that may not be possible with one-on-one interviews.

Focus groups are usually held with 6 to 10 participants; smaller groups are more appropriate when the topic of discussion is controversial or highly emotional, whereas larger groups work well for receiving a greater number of responses that may be broader or less in-depth. Sessions are usually recorded, transcribed, and analyzed using qualitative methods such as thematic analysis.

Discussion Groups

Discussion groups are a participatory method used to engage with patient and public partners in making decisions about a research study or program. People involved in a discussion group bring lived experience and experiential knowledge to the process of research decision-making. They often have unique perspectives on the health issues being researched that can enrich and strengthen the research process.

A discussion group will focus on one or more research decisions (such as selecting the specific research question, recruitment methods, data collection approaches, outcome measures, analyzing and interpreting data, or deciding how and with whom to disseminate and translate the findings). Patient and public partners are often encouraged to be actively involved as co-facilitators, shifting the power dynamic from consultation towards more genuine collaboration. Unlike focus groups, discussion groups are generally not recorded, and information is collected for research decision-making purposes, not as part of data collection.

Discussion groups are often used in the context of:

Identifying opinions and encouraging debate around certain research decisions (e.g. what should the research priority be? What should the research question be? How should we recruit participants? What outcomes should we be looking at? How should we share research findings, and with whom?)
Using previously analyzed data to generate alternate interpretations
Providing insight into the evaluation of a research project or program

How to Plan Discussion & Focus Groups

Though often more involved and complex, there are some key steps to be aware of when planning a discussion or focus group.

1) Determine Meeting Goals & Objectives

What are you trying to find out? What would you like to accomplish in this meeting? Is it a focus group answering a research question such as “how do people use this health service right now?” or “what’s the most important information to provide patients before they have surgery?” Or is it a discussion group coming to a decision such as “how many participants do we need from each demographic group?” or “what are the 3 most important outcomes of this project?” Keep the goal/objective simple and achievable — don’t aim for too much in a single meeting.

2) Develop Questions

Regardless of which type of group you’re planning, questions should have some key features for in order to achieve the desired goals and objectives. Questions should be:

Open-ended: For example, ask “what do we need to consider when doing X?” instead of “is this a good way to do X?”
Short and clear: Only ask one thing at a time (e.g. “what is the most important outcome?” instead of “what is the most important outcome and how should we measure it?”).
Conversational, informal and accessible: Avoid jargon, acronyms, and clinical language.
Appropriate for the age group, languages spoken, culture, and topic areas: For example, it may be easier for children to act out and express feelings and ideas with objects or art than to answer questions directly.
Neutral and not leading: For example, ask “which method of data collection do you prefer?” instead of “don’t you prefer method A over method B?”

Activity-Based Questions
Posing questions in the form of an activity can keep people interested and engaged, and can be used at any stage (e.g. during a warm-up or icebreaker; transitioning between topics; summarizing the discussion). These include:

Free Listing: Answer a question with a list (e.g. solutions to a problem, ways to manage pain, issues that require interventions, potential research questions).
Rating: Rank a list (this could even be one they created themselves) according to specific criteria (e.g. most to least accessible, most to least important), allowing them to prioritize factors, needs, or ideas.
Pile Sorting: Group items that have similarities or differences from each other (e.g. forms of physical activity, treatments, research topics). Typically done with cards or paper, it can be also done with objects (such as photographs). The facilitator can then ask what items grouped together have in common, or what makes each grouping different. This activity helps start conversations and elicit thought processes around a complex topic.
Choosing Among Alternatives: Offer people a variety of options (such as methods for data collection), ask them to discuss the options, and let them work together to choose one or two (or more) that suit a certain criteria — such as preferred, most appropriate, most feasible, least expensive, etc.
Storytelling: Invite people to share their story or experiential knowledge about a research topic to help answer a research question or inform research design. This powerful form of sharing is useful for bringing together diverse perspectives, coming up with solutions, and so on. Storytelling has a long-standing history and is well-received in many non-Western cultures (such as Indigenous cultures, as well as many immigrant and newcomer cultures).

3) Create an Agenda

An agenda is necessary to keep the group focused and move things forward — it also provides consistency if multiple meetings are being held on the same topic, and allows people to prepare themselves for what’s coming next in the meeting. Depending on the type of group and what its objectives are, it may be best to provide the agenda to people attending ahead of the meeting to allow them to prepare. An agenda generally looks something like:

4) Plan for Safety & Comfort

Ensure the location is accessible, inclusive, and safe (this means avoiding locations that may be triggering for people with previous negative experiences, such as a hospital, clinic, or academic institution). Consider how confidentiality will be maintained and communicate this to people involved. Ask people ahead of time for specific needs that may not be obvious (e.g. someone with a neurological disorder may require dimmed lighting and chairs that don’t swivel, spin, or have wheels).

5) Use Trained Moderators or Facilitators

A trained facilitator (for discussion groups) or moderator (for focus groups) is recommended to help ensure conversations are productive, focused, and balanced. Though similar, the roles are slightly different in that facilitators are generally seen as a neutral party responsible for ensuring a process is followed; moderators, on the other hand, are generally there to ensure conversations address the topic and guide the discussion in a certain direction. Trained professionals can ensure everyone has a chance to contribute and that contributions are recorded and probed as needed. They can also manage issues that may arise, such as conflicts, or challenging behavior. If a member of the research team will be facilitating, check with your institution to find out if training is available.

6) Gather Meeting Materials

At least a day (or even a week) ahead of time, make sure you have materials you’ll need for the group, and the right people involved. A suggested checklist from this guide to conducting focus groups includes items that are also discussed in our post on Budgeting for Patient and Public Engagement:

Facilitators or moderators
Note taker/recorder
Greeter (optional)
Questions
Agenda
Reminder to people attending
Signs indicating the location and tape
Printouts/handouts
Consent forms (for focus groups)
Pens and paper
Name tags and/or table tents
Laptop(s) for presenting; WiFi if needed
Refreshments (coffee/tea, water, light snacks, napkins/plates/cutlery)
Kleenex
Markers and flip charts if needed
Supports and resources for people involved (emotional, spiritual, etc.)

7) Arrive Early

The day of the meeting, be at the venue early. Organize materials, set up tables, ensure refreshments are set out and any audio/visual equipment is functioning. Ensure people can find the location (use signage as needed), and have someone waiting to greet attendees if the location is difficult to find.

8) Debrief

It’s a good idea for the research team to meet and talk about how the meeting went shortly after, to take advantage of first impressions and also discuss any challenges or issues. If possible, summarize the meeting and include quotes where relevant and appropriate to emphasize people’s input. This article on creating a debriefing plan provides four key questions for teams to answer in a debrief:

What were we trying to accomplish?
Did we hit (or miss) our goal?
What caused our results?
What should we stop, start, or continue doing?

Tips for Focus and Discussion Groups

Dealing with Strong Emotions

It is important to be mindful and prepared to deal with strong emotions that may arise in group settings. When asking patient partners to share information about their health and lived experiences, there is a chance that it may elicit or release strong feelings and emotions. The facilitator or moderator needs to allow space for the individual feeling these strong emotions to regain composure by sitting quietly and waiting. It’s important to be empathetic by stating something like “it’s been very hard on you” and asking “are you okay to continue?” If the individual no longer wants to participate, it may be helpful to ask if they would like to contact a support (such as a counselor or trusted friend). Provide counseling resources ahead of time (such as this list of free and low-cost counseling resources created for Winnipeg) in case they need supports.

Note: A facilitator, moderator, or other individual in a professional relationship with patient and public partners cannot and should not take the role of counselor or a friend, but rather act as a guide to help people seek support and resources outside of the group. Regardless of the emotions expressed, relationships should continue to be a professional partnership based on mutual respect and trust. It is also important to address your own needs, engage in self-care, and establish boundaries as a professional.

Addressing Challenging Behaviour

Avoid making assumptions about challenging behaviour such as negativity, distraction, or talking over others. Be open-minded and empathetic when addressing these behaviours. If the behaviour is directed at others, or disrupting the group in a non-productive way (such as limiting the ability of others to be involved), stay calm and aim to be positive and supportive in resolving the issue. Again, issues like this highlight why having a trained facilitator or moderator is so important, especially with sensitive or challenging topics.

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Some Key Things to Remember

What is not said may be just as important as what is said
Respect people’s time and other commitments by staying on schedule
Everyone has a story, and you only know a very small part of it
Record what people say, don’t rely on memory
If summarizing what was said, check back with the group to make sure you captured what they intended to say
Name tags can help you use people’s names, which will make them feel recognized and more comfortable
Everyone should have a chance to share their voice and perspective, not just a few dominant voices
Try not to over-direct or be too controlling; allow ideas and topics to flow and avoid imposing your own views and biases on the conversation