Part of our project includes gathering diverse participants to talk about the barriers and opportunities for opening pathways. Designing this meeting was important to me. And we spent a lot of time focusing on it (probably to the surprise of the rest of our research team). Everything from the right group of participants to the structure of the day, and all the details that went with it.
In order to help the team understand how we wanted to design the day, I remember early on John asked me “tell us about some meetings that you’ve been to recently where you liked the design”. And sadly, at that point in time, I couldn’t remember any good ones recently. I more vividly remembered all the meetings or conferences where I had been held up as a token patient; nothing came out of the meeting; etc. And so I started talking about the importance of designing the day so that we had participants who could set aside their ‘baggage’ and participate in the discussions openly; finding participants who had diverse perspectives; and making sure the details supported the goals of allowing and encouraging everyone to be equal participants and able to contribute and share their experience, expertise, and more.
I think we were successful in meeting these objectives with our meeting (which we called ‘the convening’ at first which turned into The Convening because I didn’t want to make up a name for it!). Here I’ll share some details about each of these categories that we focused on and what we thought about. This was by no means perfect - and I’ll share some thoughts I had for what I would change, too - but I’d love to see more discussion around designing thoughtful and productive meetings and would be happy to share more if anyone wants to dig into any of the details in the future!
Inviting diverse participants
We spent a lot of time identifying the right participants for this meeting. I wanted to include an equal mix of traditional stakeholders and perspectives and those with non-traditional paths and perspectives.
From the traditional perspective, we included:
- Someone who has worked in government healthcare
- A CEO of a medical device company (with global perspective)
- An academic researcher around open innovation systems
- Someone who works for a company that’s improving consent for research
- An academic researcher interested in the burdens of patient engagement
- A health funder perspective
- Someone who is the head of an organization in the quantified self space
From the non-traditional perspective, we invited:
- A patient advocate around genetic data sharing and research
- An innovator who invented a medical device and created a company
- A parent of a child with a healthcare condition who has helped create learning networks
- A patient who leads patient-led research projects inside a traditional organization
- A patient who started a nonprofit to increase and better target funding in their health condition area
- A parent of a child with a rare disease who is facilitating communities and research for the rare disease
Interestingly, many of these people could, and sometimes do, wear multiple hats and could share both ‘traditional’ and ‘non-traditional’ perspectives (more on that with insight about our ‘activity’ to start the day). But in addition to the ‘roles’ they’ve played, there was also an important criteria for their participation: they have demonstrated themselves to be big-picture thinkers to understand many moving parts of the healthcare ecosystem.
I focused initially on the traditional/non-traditional stakeholder experience, but after creating that initial list, checked for gender balance and found it fairly equal (7 male, 6 female), which was also important to me in the design of the day.
It was also important to me that all participants be paid equally for their time and expertise. This was written into my grant proposal and my grant budget to provide an honorarium for all attendees, regardless of their role, in addition to covering the travel expenses to participate.
Encouraging equitable participation
One of the other ways we spent a lot of time thinking about the day was designing it for equitable participation. Traditionally in meetings (inside companies or at conferences, etc.), the loudest, most insistent voice can dominate. This meeting was not about ‘winning’ or convincing others, but about learning from everyone who was in the room.
This is where John’s contributions to our team made a huge impact - he’s a pro (I won’t let him edit this out!) at designing conversations, and moderating conversations, to allow everyone to participate. We talked through different ways to structure our ‘breakout’ sessions when we split into two table groups to have some of the conversations, both in terms of the starter questions we used to facilitate discussion as well as designing to have moments of pausing to allow everyone to reflect before discussing. This allows people who need more time to process and reflect before speaking to have a greater chance to contribute. (As a fast processor and talker, I really appreciated learning from John about the importance of doing this in group conversations and plan to use this moving forward!)
We also, among our research team, decided who would play which role for these breakouts very carefully. I asked John and Erik (Johnston) to be the lead moderators at the table, and asked Sayali and Eric (Hekler) to support by taking notes at the table.
Also, I very carefully did not place myself in any of these roles - or even sit at either of the two tables during the breakout - for particular reasons.
Why? Well, I knew that it was likely that participants would turn to me for clarifying questions during the start of the conversations, and I didn’t want my own biases or experiences to color the participation of anyone in the room. So, I essentially worked very hard to sit back and listen in at both tables and sit on my hands. It was HARD! But, I think it was the right thing to do, and allowed John and Erik to be point very clearly, and kept my own experiences from driving any of the conversations, because this meeting was not about me or my own work.
Leaving baggage at the door
This brings me to one of my favorite aspects of the day. In order to help people clear their minds and calibrate their participation to be open and engaging in the moment with the research topics, John and I talked a lot about how to start the meeting. Having spent a lot of time on planes lately, I used the analogy of ‘checking baggage’ to describe how I wanted to be able to have participants set aside the thing they always talk about, and discuss deeper perspectives.
I thought about it for a minute after I said ‘check their baggage’ and said, “What if we really did have people check their baggage?” and this ended up inspiring our icebreaker/introduction activity and the rest of the day.
We decided to create a physical ‘baggage claim’ area on the wall, and ask people to check their baggage as they arrived. Meaning: to write down the things that they always talk about, and are frustrated by, and show up and say at every meeting, to get them out of their system and enable the discussions to go deeper. (That would also give a table moderator the opportunity, if someone circled back to the same ideas during the discussions, a nice way to suggest that they write it down and check it to remove it from the discussion. )
While thinking about the airline analogy, it prompted an idea to use the first class/economy experiences as a way to illustrate the perspective I have that people who work traditionally in healthcare often have an easier time, and more resources, than people coming from non-traditional perspectives (like patients). For our meeting, we wanted to flip that starting experience, and so attendees with ‘traditional’ perspectives were given “economy” class tickets while ‘non-traditional’ perspective attendees were given “first class” tickets.
To subtly emphasize this theme, people with first class tickets were guided to their table that had water bottles, and offered help in grabbing breakfast. They were also guided to the baggage claim and walked through the activity - all the way to the point where we “checked” the baggage for them (hung up their sticky notes). Economy class participants were pointed to their table and breakfast; told about the activity; and left to their own devices.
I had carefully also placed extra chairs at the ‘economy’ table that I had some of our team sit in, so that when I opened the meeting, that table was a little cramped compared to the first class table.
(Once I started the meeting, I asked my team to stand up and give some space back to that table! I also talked about why we used that analogy to show the different experiences people have when trying to achieve things in healthcare, and how people in the traditional ecosystem often have more resources and an easier time.)
Other details that mattered (to me): food
Getting the food right was HUGE to me. (I have celiac disease, so 4 out of every 5 meetings require me to eat snacks from my bag because there is no gluten free food or it is unsafe to eat). When we invited attendees, I asked for any food allergies or food restrictions/requests. We heard that various attendees:
- Had a shellfish allergy
- Had a peanut allergy
- Were vegetarian
- Preferred non-red meat, non-fried, non-creamy food
- And I’m gluten free
So, that drove the menu choices. I ordered everything, with one exception, to be 100% gluten free. For breakfast, I picked an egg frittata (one with meat; one that was vegetarian), bacon, gluten-free zucchini bread with honey-walnut spread, and potatoes. For lunch, we had a mediterranean beef entree option and a grilled cauliflower/vegetable medley vegetarian entree option, plus a salad station and finger desserts. In addition to being 100% gluten free, I confirmed with the caterer that it was all shellfish-free and peanut-free, and spoke directly to those attendees to let them know the menu was shellfish- and peanut-free.
It was also important to me, even though I was the only gluten free person, to do food signage the way I wish they were done at every meeting. So we had menu signs at the front of the buffet showing what was gluten free and vegetarian; and I also created individual food item signs to indicate GF+V, or just GF, to be placed with each food item.
(The only item that had gluten was bread, that came with the entree items. Since I was the only GF attendee, I decided not to pay for gluten free bread for everyone, and just have the normal bread, after I confirmed with the caterer that it came from an outside bakery and would arrive already wrapped and wouldn’t risk cross-contaminating the gluten free food. I made it very clear that this was gluten-containing and made sure it was on a separate table, away from the rest of the gluten free food, so there would be no contamination in the buffet line).
Other details that mattered (to me): baggage and flight touches
I was wondering how to design our ‘baggage claim’ without requiring a lot of physical gear. And similarly, I liked the idea of providing a favor/thank you token that was baggage-related, to help bring the theme to the end of the meeting, and not just the beginning.
With help from some of my amazing sisters-in-law and mother-in-law, I grabbed a design file from Etsy and used the different colored baggage shapes in different ways:
- Baggage signs, and baggage shapes to decorate the ‘baggage claim’
- I used the shapes for the first class/economy signs for the tables
- And we used it to create the favor bags, which contained a thank you note and a snack for the road.
What I liked, and what I would do differently:
I am very pleased with the way the day shaped up; how it enabled equitable participation in the discussions; the insights our team learned (which will be shared in subsequent posts); and how the activity set the right tone for the day.
As a metric of success, I was surprised but pleased to hear John later reflect that he likely won’t organize another meeting without a breakout activity like the ‘baggage claim’ or another ‘framing’ activity he has done in the past, because it set the tone and also gave participants an analogy and shared language to use throughout the day. This shared language is meaningful and facilitates stronger communication with a diverse group of participants without having to explain a lot of other jargon throughout the day.
Most of what I would change has to do with meeting coordination and the work it takes to put on a physical meeting.
- I spent a lot of time planning the logistics of the meeting (meeting space, ordering food, etc), because I didn’t have anyone on our team to delegate to for this set of tasks. (If I was a traditional PI at an institution, I’d likely have admin staff I could tap for support, but I don’t have that as a patient PI). This was especially challenging because we were using meeting space I had never seen before, in a city across the country from where I live.
- The day-of, I didn’t have a ‘helper’ and so did a lot of meeting logistic setup myself - setting up the food (the caterer basically dropped it and left), etc. (For future meetings, I’ll make sure to hire or borrow or otherwise have someone who can help with some of those details. It didn’t turn out to be a huge hassle, and actually helped me sit on my hands (see above) from joining the table discussions, but I could have listened to more of the discussions in real-time without having to worry about these details.)
- I also spent the time to create the signage/do the baggage favors, etc. That’s something I really liked and think made a big difference; but I’m not sure if I would do it for all meetings moving forward; or would find a way to get the right touch while buying things commercially rather than making them myself.
Tl;dr (too long; didn’t read)
In summary, I think the design of the meeting was effective, and I’m glad we did it! This post is primarily meant to talk about these design details and what we thought about in planning our meeting. Stay tuned for other posts talking about the content of the meeting, what we learned, and how we’ll use these insights moving forward!
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