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I’m a scientist. I design and run research studies – usually, those with a psychological or social twist – for T1D Exchange to understand the various experiences of people living with type 1 diabetes (T1D).
A common question some folks have when it comes to certain kinds of science and research: why do we need to research that? Some might even think well even I (non-scientist) could do that!
It’s a good question and one that scientists have not been great at answering.
The truth is everyone uses and understands scientific thinking – but the why and the how of research may not be as familiar to everyone.
Everyone is a scientist…at least sort of!
Scientific research begins with observation. We notice something in our environment and ask ourselves, “Why is that?”
People use this first step and other portions of the scientific method in daily life. When a person observes something unfamiliar, they may come up with many explanations to explain why: some explanations may be accurate, and some may not.
We are designed to see patterns and connections and to think in cause-and-effect. But we’re usually not seeing the whole picture in our own experiences. So we make errors – errors in thought or errors in logic or reasoning. Our observations or reasonings may be flawed because our brains fill in information that might not be there. We use what we already know to understand things we don’t, and we may ignore important information in the process.
So, while observations are a starting point for scientific research, it doesn’t end there. Researchers compare their observations to scientific research that’s been published to gain a better understanding of what they’re really seeing first. They finally settle on a question (or a handful of questions) – usually one doesn’t have a clear explanation in the current body of research.
Methods to the scientific madness
But how do we go about finding the answer to our questions?
There is no one right approach to answer a research question, but there are standards in each approach – or research method – scientists use. The value in any approach is whether the method can reasonably answer the question asked and in what kinds of conclusions the scientist wants to draw. Really, there is no perfect or ‘better’ method than anyone else. There will be times when one method works better than another because we have a question that requires it. Below are three common types of research relevant to people with T1D.
Clinical Trials and Difficulties of Causality
Are we asking whether one thing causes another? In T1D research, one of the most common type of study that tries to understand causes effects is a clinical trial.
Say a pharmaceutical company wants to know their new Drug X works to lower blood glucose in people with T1D. To show that it’s Drug X causing any improvements in blood glucose, scientists need to: have two groups of people (those who get Drug X and those who do not); make sure participants and themselves (the scientists) don’t know who is getting Drug X (a double-blinded study) which usually involves another treatment or a placebo to the non-Drug X folks; ensuring people who get Drug X are similar enough to people who don’t; and even more to show a difference in blood glucose is because of Drug X and not something else.
Not all research questions are interested in whether one thing causes another. Sometimes, it’s enough to know more about whether one thing is related to another thing and what that relationship looks like.
Survey research is often used to understand these kinds of non-causal relationships, or correlations. Surveys – or questionnaires – involve asking people about their experiences. We can ask open-ended questions (“Tell me about your experience with a low blood glucose event in the past month – what happened?”), stick with numbers (“How many times have you had a low blood glucose in the past month?”), or have participants quantify complex experiences (“In the past week, how much of an impact have low blood glucose events had on your sleep?”) by responding on a set scale (“Not at all” to “Extremely Large”).
Surveys have the potential to reach a lot of people. More people means greater understanding of more experiences – which is usually (though not always) more accurate. But there are limits to the conclusions we can draw when we use surveys.
We can only look at associations. If we ask people how many low blood glucose (BG) events they had in the past month and answer questions about depressive symptoms, we might find that people who report a higher number of low BG events also report more depressive symptoms. Does this mean low BG causes depression?
No! It could be that more depressive symptoms lead people to do something different in their management that then leads to low BG events. Or there could be many other explanations.
Although we can’t show causality, it might be a very useful answer to know that low BG events are related to depressive symptoms. With survey research, we can understand complex relationships between people’s experiences and estimate the amount of impact one thing (like low BG) has on another (like depressive symptoms).
Qualitative Research in Focus Groups
Qualitative research can be done with surveys – like in the example above – but also can use a structured interview or discussion. The goal of qualitative research is to understand people’s lived experiences in their own words.
Qualitative research includes individual or group interviews – like a focus group of people with T1D asking to share their feedback on a new piece of diabetes technology.
Later, researchers ask participants questions about their experiences. Sometimes there is a set format to these questions, other times it’s completely open and up to the participant to continue. Researchers then comb through the responses using a pre-set criteria to ‘code’ the responses. If participants are asked to “Tell me about a recent time when you experienced a low blood glucose”, there are a lot of possible responses.
Person A might say, “It was in the middle of the night and my alarm went off. I was so out of it, my partner had to help me. I was still able to drink juice, though so we made it work.”
Person B might say, “I didn’t hear my CGM alarm, but my partner did and woke me up. I keep snacks by the bed, so I had some, waited, and was able to get my BG back up so I could sleep again.”
These are two different people with two different experiences, but they have some things in common. Maybe we want to code these as ‘Overnight Lows’ or ‘Partner Support’. Coding helps more easily communicate the vast number of experiences people have by organizing them together.
Why participate in research?
Our understanding of people’s experiences with T1D can only be accurately captured if the people who participate in research accurately reflect the kinds of people with T1D.
By participating in research and sharing your experiences – whatever they are – you contribute to what scientists know about T1D and what it is like to live with it.
Participation in research can lead to things like new treatments or better product design, but it can also lead to things like better communication with providers or understanding who might benefit from a different kind of care approach.
And – usually – there are some direct benefits for you. Many research studies will compensate you for their time with money, a gift card, or something else of value. Sometimes, research studies give you insights about yourself that you might not have thought of otherwise. Some research studies may provide you access to newer technology or treatments. Some research studies may give you new information to discuss with your healthcare provider.
When it comes down to it, your experiences living with T1D matter. By participating in research, your voice is heard among the crowd of other people with T1D. The next time you see a research opportunity, what will you have to say?
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