Why Moderating About Diabetes is the Best Job in the World

By Alice Morgan and Sylvie Croteau

We have had long and happy careers as qualitative researchers, interviewing people about all sorts of things and listening to their stories.? In 2007, Sylvie’s son was diagnosed with Type 1 diabetes, and in 2015, Alice’s son was as well.? Our families’ subsequent journeys caused us to switch jobs, transitioning from jack-of-all-trades interviewers to moderators with a singular focus on diabetes.

We joined a team of people on fire to understand the patient experience in diabetes and advocate for better treatment.? In this process, we discovered - well - the best job in the world.? As our moderating colleagues know, moderating is always a great job – it’s super fun and interesting to hear people’s stories and figure out what makes them tick.? But interviewing people with diabetes is on another level.? For the following reasons:

• Substance not surplus
• Inviting innovation
• All walks of life
• Never a dull moment
• Oh, what a time!

Substance not surplus

Much qualitative research focuses on purchase decisions for consumer packaged goods.? The companies who make these products are understandably trying to find out why people buy the things they buy.? Highly sophisticated techniques have been developed to try to crack this nut.? The problem is, people are asked about low-involvement categories, meaning they may not care that much about the topic.

High-involvement categories do exist outside of healthcare, most notably in automotive, which we have written about previously and is super fun.? Diabetes, though certainly not as fun as buying a car, is similar in that it is very high-involvement.? Diabetes is a chronic condition. It affects people’s lives in a myriad of ways. It involves a daily stream of decisions. People may not care that much about their laundry detergent.? But they care deeply about their diabetes.? ?And are highly motivated to share their stories, freely and generously.? They know that by doing so companies will make better drugs, devices, apps, and services for people with diabetes.? We’re all in this together.?

Our knowledge of diabetes therapies, realities and terminology allows us to go deep.? Ever heard of “naked showers” in the context of diabetes? ?What about “unicorns”? We have. When participants recognize our profound familiarity with diabetes, we take the session to a whole new level. ?

Inviting innovation

Living with diabetes is literally and metaphorically a roller coaster, powered by swings in blood glucose: highs that can be annoying and frustrating, and lows that can be downright dangerous.? If you interview someone at one point in time you miss much of the action.? Memory, as has been repeatedly documented in law enforcement, is fallible.? So we have adopted and refined a number of nifty techniques that capture peoples’ diabetes experiences over time, via videos, apps, and in-the-moment texting about daily successes and frustrations.? These approaches reveal nuances that might remain hidden through traditional questioning, ensuring a comprehensive understanding of the diabetes journey.? We play the long game to get the full picture.

Another innovation we like is observing people directly.? Think about taking insulin.? (Given that we are in diabetes, we think about taking insulin a lot!)? A retrospective account of taking insulin, in which people describe what typically occurs, also misses much of the action.? So we got creative.? We conducted a study in which interviews were timed to occur when respondents administered their insulin doses.? The first part of the interview was observational.? Participants assembled their insulin injection pens and gave themselves injections at home while we watched online via high-resolution cameras.? After the injection observation, we asked about the specifics of the experience.? This technique uncovered challenges and behaviors that direct questioning would probably have missed, and ensured that the injection experience was top-of-mind. ?Here is the article in Clinical Diabetes about the approach.

All walks of life

Interviewing people is intense. Moderators get to know people on a profound, personal level.?? Diabetes impacts all kinds of people, and everyone connected to it.? We have interviewed parents.? We have interviewed Seniors.? We have interviewed kids and teens.? We have interviewed people from a variety of cultural and ethnic backgrounds.? We are honored to shine on a light on these folks’ stories and situations.

We all live in a bubble, whether it be a city, a suburb, or a rural community. Alice lives in Ann Arbor Michigan, a Midwestern college town. Sylvie lives in Victoria BC, Canada.? Moderating gets us out of our bubble, as we are constantly reminded that there’s a whole world out there.? Diabetes often impacts people with poor social determinants of health.? Our team interviews many of them.? Many people with diabetes are not highly educated. Many are just getting by. But almost everyone provides razor-sharp feedback. They are smart.? They are savvy.? They are a joy.

Never a dull moment

There is no one way to interview people. Lots of people are successful at it – introverts, extroverts, the whole shebang. What is needed is creativity, empathy, and the ability to turn on a dime. We all get there differently. In several instances our team has had people start crying as they recounted painful experiences, such as when they were diagnosed, or when they were stigmatized and stereotyped simply because they have a medical condition. We needed to lighten the mood – fast. And we did. Moderating a group is like conducting. We bring out the taciturn, and subdue the loquacious. It is challenging. No two sessions are ever the same. This is a job that keeps you on our toes.

Oh, what a time!

Implantable CGMs!? Artificial pancreas!? Beta cell encapsulation!? GLP-1s!? The treatment pathways have exploded in the past 5 years with ground-breaking drugs and devices constantly being developed.?

Our team has interviewed thousands of people with diabetes and health care professionals who serve them. We have had a hand in helping our clients make smarter pumps, better CGMs, and on-point communication that explains benefits without purporting to “cure” diabetes. We are honored to help companies make products and services better for the 400+ million people in the world now living with diabetes.?We are passionately committed to making this chronic condition less of a burden.? And that is what keeps us still crazy about diabetes qualitative after all these years.

Alice Morgan and Sylvie Croteau are qualitative researchers for dQ&A, an insights company focused on diabetes and metabolic health.